Thursday, December 22, 2011

The Miracle of Ordinary Days - Part 17

Every pregnant lady knows this drill.  You walk into your doctor's office and get your blood pressure taken and they test your urine.  Do you know why this is a necessary occurrence for all pregnant ladies?  I didn't until my 34 week of pregnancy with my second child.  I had been on partial bed rest for quite a few weeks because my blood pressure had been higher than normal.  I had always had normal blood pressure up until this time so I didn't think anything of it.  I had not been anywhere near 34 weeks pregnant with Abby so this stage of pregnancy was totally new to me.  Abby was at my mom's house hanging out with Grandma.  She had just turned 3 years old in January.  She was a beautiful, sweet and vibrant girl and anxiously awaiting her baby brother's birth.  We were all very excited!

I had started to swell quite a bit.  Another rather normal symptom of pregnancy.  I kept off my feet as much as possible but I had a busy three-year-old to take care of.  I cut down on my sodium intake and hoped for the best.  At my 34 week appointment I went into see Dr. Fine.  I had been experiencing mild headaches for days and felt very, very tired all of which I attributed to being so far along in my pregnancy. 

When I walked into the back of the office they took my blood pressure and urine sample.  I can't remember the number for my blood pressure but it was very high for me and I was surprised.  Dr. Fine's nurse Jody took me in to lay down.  After at least ten minutes of laying on my left side, she took my blood pressure again.  It was a little lower but still really high.  She went back to find Dr. Fine and he came in. 
Dr. Fine is always really calm and has a way of breaking news to me that I can take pretty well.  He told me that with the high blood pressure and the amount of protein in the urine I would need to be admitted to the hospital so they could monitor the amount of protein and my blood pressure.  When there is protein in the urine it indicates that the kidneys are not able to function very well.  Higher levels of protein in the urine indicate that the kidneys are starting to shut down. 
I realized it was serious when he told me I wouldn't even be able to go home to change my clothes or pack anything.  He asked me about headaches and I told him that I had a few through the week.  Also I had occasionally and more regularly seen stars when I stood up. He looked grim and said they would monitor me but I needed to prepare to have my baby a little early.  Under the circumstances I took that pretty well.  I knew what having an early baby was like and even if I needed to have the baby that day I knew that 34 weeks was not anything like 28 weeks.  Jody gave me a big hug and told me that she was sorry this was happening.  She is always so kind to me.  Dr. Fine told me he would be up to see me soon.

I went to drive my car around to the other side of the hospital and park where there was overnight parking.  I called my mom and told her what was going on.  She told me that Abby was welcome to stay with her until we knew what was happening.  Then I called Aaron and for the first time broke down in tears and told him that they were admitting me.  He told me not to worry and that he would be by as soon as he could. 

I was in the hospital for four days.  I wasn't allowed out of bed except to go to the bathroom and sleep was hard because I was in bed all day.  Even with all of that my blood pressure continued to rise.  They took it hourly day and night.  I couldn't eat very much because at any time my blood pressure could spike and they would need to deliver the baby by c-section.  I tried to keep my spirits up but I felt sad and sick because I couldn't be home and waiting the rest of the time.  I was happy to get that far but sad not to get all the way to the end.  They pumped me full of fluid to keep me hydrated.  I felt like I shouldn't be exhausted but I was. I have never felt so sick in my life.

Finally on March 17th my blood pressure was still very high and the amount of protein that I was spilling was a lot higher than when I had come in.  Dr. Fine came to see me and sat down on my bed to tell me that I would need to deliver in the morning.  He also told me that he would be transferring me to Deaconess so that I could deliver there.  They had been giving me steroids to aid the development of Tyler's lungs but there were still possibilities of problems because he would be delivered via c-section.  The birthing process aids babies born naturally to be prepared to breathe on their own.  C-section babies tend to have more difficulties with breathing after birth because of this.  I was very grateful that Dr. Fine had the caring and forethought to have us moved up there.  He knew that if there were problems Tyler I would be transferred to either Sacred Heart or Deaconess for NICU care.  This way we would not be separated. 

That night was particularly difficult for me.  Aaron had stayed home to be with Abby for one more night and I was alone with my thoughts.  I felt very lonely and was worried for the baby.  I worried that he would have to stay in the hospital.  You would think that having Abby in the hospital would have prepared me to leave another one in the hospital and maybe it did to a certain extent.  I still did not want to deliver early and was more worried about him than I was about myself.  I was still very down and talked with my dad on the phone that night.  He talked with me and prayed with me and made it easier for me to sleep. 

We traveled in the ambulance to Deaconess the next morning and went directly to the delivery room.  Just as it had been with Abby the room was quiet and full of anticipation.  It was not nearly as tense for me because I felt very strongly that he would be okay but it was still a relief to hear him cry.  Aaron left with him to go to the NICU.  We knew the drill and he was able to follow him back with no problem. 

I was taken to my room to recover.  With preeclampsia delivering the baby is supposed to immediately make the blood pressure go down.  This didn't happen for me.  My blood pressure stayed elevated.  I was in a haze and felt huge and puffy.  In reality, I was huge and puffy.  They gave me Magnesium Sulfate which I would like to dub "liquid torture".  The nurse warned me that I was going to feel horrible for a while but that it would help bring my blood pressure down.  She was not kidding.  I have never felt so sick in my life.  I really felt like I was going to die.  They kept the lights in my room low and visitors were not allowed to stay.  Everyone came and left except for Aaron and a nurse who sat beside me until I was stable. 

The only highlight of this time was Aaron coming in with pictures of Tyler.  He looked awesome and I couldn't wait to see him.  He weighed exactly 5 pounds and was having some breathing issues but otherwise he was doing well.  Again, nothing nearly as alarming as Abby's situation but still not anywhere near a normal birth.  I had come into the hospital with a cold and my tendency for breathing problems made this worse.  The nurse kept having to remind me to take deep breaths.  I remember looking over at the monitor and remembering all the numbers from our time in the NICU with Abby what each of them meant.  I watched my oxygen saturation dip down in the low nineties and high eighties.  It was odd to be on the other end of the monitor.  I was fascinated by that and had to remind myself to breathe deeply and when that didn't work well I had to do breathing treatments to get my numbers up.

One of the side effects of the magnesium sulfate was constant sweating and feeling unbelievably hot and prickly all over.  This combined with a plastic bed gave me a giant rash that itched like nothing I had ever had before.  My whole body itched from the inside out and I couldn't do anything about it.  I felt shaky and sick.  I didn't have a clear thought in my head for quite a long time.  I felt very weak and very out of it.  I kept my eyes closed and tried to sleep.

Slowly through the day and night my numbers improved.  They took my blood pressure so often that they didn't even take the cuff off of me and sleep was not easy.  I don't remember seeing Tyler that day except in the pictures. I wasn't well enough to get up out of bed to do it anyway.  Details of that time are very spotty for me.  I remember only waking up periodically to see Aaron studying diligently in the corner and the occasional nurse that came to check on me.  Later that night I remember telling someone about the rash that I had and their surprise at how bad it was.  Aaron left for a little while to have dinner and four nurses came to help me get clean. It was a little painful for me but it felt so nice to be cooled down and to have my hair washed that I didn't care.  It had been about a week since I could get up out of bed and I'm sure I looked pretty terrible.  Nurses are amazing like that. They helped me so much that night.  I felt pretty helpless because I had just had a c-section and was sick enough that moving was difficult but they took really good care of me. They gave me a new bed with clean sheets and clean clothes to change into and I felt much better. 

I started to feel better as my blood pressure went down.  I don't remember how long it took for it to get back to normal but it took longer than it was supposed to.  Dr. Fine was off for a day and his partner Dr. Brasch came to see me.  I remember that he came in and told me that I needed to buck up and get better or he would not let me see my baby the next day and that I needed to work harder at getting well. I'm sure this was meant to be encouraging but at the time it was infuriating.  I am rarely openly ticked at people but I gave him some saucy words in return.  What more did he want me to do? It's not like I was forcing my blood pressure up at will.  I'm sure he was trying to tick me off so I would fight a little more but I was seriously done.  I wanted Dr. Fine back.  Don't mess with a mommy in pain, mister. 

Finally they moved me out of the recovery room and I was in my own room.  My blood pressure was normalizing and I was able to get up and walk.  I had wanted to see Tyler all night but hadn't been with it enough to worry.  Aaron went to every care time and gave me updates to how he was doing.  It was late afternoon and I was able to visit Tyler.  He had needed the ventilator for part of the night but when I saw him he was on a nose cannula and doing very well.  He had frequent central apnea episodes that were the main concern but was otherwise doing well.  He was so much bigger than Abby which was such a relief and I fell in love with him instantly.  I didn't get to stay very long because I was still weak.

The only other side effect of that really high blood pressure was some eye damage.  I had a few blank spots in my vision.  It was very strange because I could see everything clearly but there were white spots where there was nothing but white.  It was odd for me but it went away after about three months.  It was a relief to know that it was not permanent. 

Abby came to see me with her Grandma and Grandpa Martin and we were able to show her pictures of her brother.  She was so cute and wanted to see him.  I was able to go home after four days in the hospital and recover.  Leaving Tyler in the hospital was heart wrenching but easier because I knew that he would not be there as long as Abby had been.  I tried to make a joke about it by saying that I needed the nurses to get him on a schedule before we brought him home.  It did give me time to heal before he came home but obviously I would have preferred for him to come home with us. 

Tyler was doing well and his experience in the NICU was much shorter than Abby's.  It was nice to be there with him and feed him.  It was also cool to visit with the doctors and nurses once again.  He was transferred over to the feeding and growing nursery after just a few days.  He didn't have the problems with getting tired that Abby did and he could take a bottle and breast feed with no problem.  He was still having central apnea spells which prevented him from going home but he was ready to come home in every other way.  They told us to plan on him being there for at least a week and they slowly added on more time. Every time that he would be scheduled to go home the next day he would have another apnea spell and have to stay longer. It was a process that we were used to but it was still difficult because life was on hold again and we wanted things to return to normal. 

Finally everything was ready to go.  I had been scheduled to deliver him at 38 weeks on the 7th of April.  That was the day that we brought him home from the hospital.  We celebrated and took pictures with Abby, Aaron and Tyler all decked out in their Husky clothes.  We were a whole family again and Abby had a new brother that we all adored.  Our wish of more children had come true and I was so grateful to be with them.  Through those dark nights in the hospital I had pondered what life would be like for my little family if I were not to survive and the prospect was not one that I wanted to consider.  It was the closest to death that I have ever felt in my life and I knew more than ever that I was where I wanted to be doing what I wanted to do and now I had two beautiful children to teach and help.  It was a blessing for me and I was fully aware of God's help once again in my life to bring me through a difficult personal trial.  I knew that he was aware of me on those dark nights when I was alone and I received the comfort that I needed through those prayers and I was very grateful for that.   My new life with them was just beginning and a new spirit of reassurance and happiness entered my heart.  I knew that there would be challenges ahead but with my family around me, I felt I could do anything.

Tuesday, December 20, 2011

The Miracle of Ordinary Days - Part 16

As days turned into months and months into years Abby grew quickly and well.  She started out in the 2nd percentile for her age at birth.  For months she remained steadily growing at the 2nd percentile curve on the growth chart steadily gaining a little bit of growth in percentage until around her third birthday.  She was finally up in the 1oth percentile in weight and height.  It was awesome!  She used a bottle a little longer than most babies until she was about 13 or 14 months.  She was followed closely to watch her growth and they gave me recommendations that I wasn't sure of like adding butter to her food and giving her only whole milk.  I felt strongly that she would continue to catch up by herself so I listened to what they suggested but did not put butter in her food.  I also educated myself by reading studies about premature babies and obesity later in life and I decided that I also felt like as long as she was a healthy eater and was getting consistent meals that eventually everything would work out. 

Around her first birthday, Aaron and I started to discuss having more children.  We both wanted more kids and felt that it was important for our family to give Abby a sibling and also what God wanted us to do.  We had been reassured that what had happened with Abby was unlikely to happen again.  Through a lot of prayer and reassurance we started to try again to have a baby.  I became pregnant and miscarried that baby at about seven weeks.  It was very difficult for me.  With my first miscarriage I had not been able to see the heartbeat.  With this baby I was there for an ultrasound early on and saw the heartbeat.  At the second ultrasound at about seven weeks the heartbeat was not there.  It is an emotional and trying experience to miscarry but I took a lot of solace in the fact that I had Abby and could try again.  It took me a few months to prepare myself for another try. 

There was a lot going on at the time.  Aaron had finished under grad and we moved to Kennewick, Washington so that he could open a store for his dad's window business.  In the fall of 2004 I found out that I was pregnant once again and as always was thrilled with the prospect of pregnancy and a new baby.  Dr. Fine gave me a referral to Dr. Cates in Richland.  He specialized in high-risk pregnancies.  I went in early for blood tests and ultrasounds.  It was during this time that we discussed Abby's birth and talked about the possibility that I didn't have a Protein S deficiency.  It was interesting to me to hear this and I asked if he had another explanation for me.  He said he didn't have one but in looking at my protein levels from that time they were not particularly low for a pregnant lady.  Apparently Protein S is naturally reduced by the body during pregnancy and he shared studies with me regarding it all.  He agreed that I had been given the correct course of treatment and that Abby's birth had been necessary to save her life.  But it also raised more questions in my mind for future pregnancies.

I lost this second pregnancy at eight weeks gestation.  Again, I had been to the doctor early and seen the baby's heartbeat.  It was very discouraging and disheartening when I began to bleed and lost the baby.  It felt like I was broken and I was frustrated and sad.  I again found solace in Abby.  She was growing well and doing well and I decided that I needed to wait a little while to try again.  It is hard to explain such feelings and I'm not sure I can do them justice.  The kind of loss that is associated with miscarriage is hard to explain and to deal with at times.  I found a lot of comfort in the fact that I could get pregnant but staying pregnant seemed to elude me.  I had faith but I was weary of the losses and I felt that we weren't receiving the promised blessings of another child.  It was a very sad time for me.

We moved back to Spokane shortly after this and Aaron began a new job with Washington Mutual.  It was a good time for us.  Abby was delightful.  So cute and smart.  She learned how to talk and was really good at singing songs with me.  She also was great at entertaining herself and making messes like any two-year-old.  She loved to watch Dragon Tales.  My days were spent being her mom, taking care of the household chores and doing church callings.  I was happy to see her doing so well. 

In the summer of 2005 I found out that I was expecting again.  I was excited but apprehensive about whether or not this pregnancy would last.  I was happy to be able to go back to Dr. Fine and his staff.  It felt so nice to be back with people who I didn't have to explain things to and who knew what had happened with Abby and my two miscarriages.  They were so understanding and supportive of us.  I began the same order of blood tests and ultrasounds as I had previously.  When a pregnancy is healthy those numbers should double every 48 hours.  With my two miscarriages we had started to see problems with the pregnancy in the sixth and seventh week.  Our families were supportive of this process and it was nice to have people who cared.  We didn't tell many people that we were pregnant because we had learned from sad experience that it is more difficult to deal with miscarriage when too many people know.  

Another development that occurred during this time was having my sister Kim see Dr. Fine.  Kim had a baby the year before with Dr. Fine as her doctor and he knew her history.  It helped him to see that there might be a connection with the problems that I was having also.  It involved low progesterone levels during the early part of the pregnancy.  He gave me progesterone to take to see if it might help stave off a possible miscarriage.  After the first blood test my pregnancy hormones were rising but at the second blood test Dr. Fine called me very concerned.  He told me that my number wasn't lowering but it was not rising as quickly as he would have liked and that I should prepare myself to lose another pregnancy.

When I got off the phone I immediately went to my room and knelt by the bed.  The two previous losses had been so hard that I couldn't fathom a third.  I poured out my heart to my Heavenly Father and told him that if he ever wanted me to have another baby that I needed to keep this pregnancy.  I was just too weary for anymore loss.  That night, my dad and Aaron gave me a blessing and I was assured through that blessing that he would be okay and that he would be healthy and strong but not without challenges.  My dad kept referring to the baby as he or him and we questioned him afterward to see if he had felt that it would be a boy.  He joked, saying that he wasn't going to guarantee it but that they were the words he was told to use. I felt the Spirit confirm that and I had no doubt that this baby inside would survive.   Blood tests confirmed that things were going well again and I told Dr. Fine about the blessing and prayers that we had said.  He is a man of faith and was happy that he had been wrong. 

I felt very good through most of my pregnancy.  Abby was into everything at that point so I was constantly running after her.  Luckily, we lived in a small apartment with little furniture so she had plenty of room to run around in.  Every day at about three o'clock in the afternoon I would fall asleep for a little while.  I was never exactly sure when it would happen but I prepared for it by making sure that she was fed and safe before I laid down.  I was determined to be as healthy as possible during this time so after the first few months of pregnancy when I felt the danger of miscarriage had past I would go to the mall to walk around and get exercise.  Most days I was really tired. 

Our days were good.  Time went by quickly and every minute, week and month that went by felt like a gift.  The 28th week passed quietly and I breathed a sigh of relief. As did the 30th, 31st, 32nd and 33rd.  At the 34th week a new challenge would be presented that would make this pregnancy a different test for our family and especially for me.  I was in for another teaching experience but this time it was me that would have the challenge.

Wednesday, December 14, 2011

The Miracle of Ordinary Days - Part 15

Abby at 6 months
It might be helpful at this point to explain how you characterize the age of a premature baby.  Unlike a newborn who is born on time it would be inaccurate to expect a three months premature baby to do the same things that a fully grown newborn can do. There would never be a way for that baby to "catch up".  This is called adjusted age vs. chronological age.  So in adjusted age Abby's newborn status would not start until she was 3 months old, she would be considered 3 months old when she was 6 months old, 6 months old at 9 months old and so forth.  For development purposes this is how they determine her adjusted age. They stop this practice once the baby reaches 2 years old.  Most babies, "catch up" by this time and track pretty well developmentally with kids their own chronological age. 

Abby continued to develop well.  She was assessed for any problems and was followed closely for the first two years to ensure that she had the proper intervention if needed.  We had awesome people in our corner including occupational and physical therapists, dietitians, doctors and nurses. We were happy to see that there were not huge difficulties for her developmentally. 

Many times with such small babies there are problems with development.  One of Abby's issues was heightened muscle tone that made her stiff and super strong.  Abby's abdominal muscles would be the envy of any super athlete.  We would do exercises with her legs and arms to straighten them out.  We used to laugh at the way she would sleep.  She would sleep on her back with her hands out in front of her stiffly up in the air like Frankenstein's monster.  Over time and with exercises, this tendency lessened and her overall flexibility improved.  

One of the other side effects from months in the NICU was that because her head was constantly put to the side her head was elongated.  This we slowly improved by cushioning her head so that she could look straight forward while sleeping.  This improved the shape of her head immensely and now her head is beautifully shaped. Thank goodness for Occupational and Physical Therapists!

Abby is a determined kid.  On the day she turned 6 months old she rolled over for the first time not just one way but both ways.  First from her belly to her back and then from her back to her tummy.  She started standing up next to the couch when she was about 8 months old.  She was still so little that it was a funny sight to see a baby that was just about 10 pounds standing up next to the couch.  She was really strong. 

Tummy time seemed to be particularly uncomfortable early on I would assume because of the tube in her tummy.  She would get very mad when we would put her on her tummy.  Once she started turning over she solved that problem quickly by turning over on her back.  She still wanted to be able to move around so she solved that by turning to her back and scooting around the floor by pushing her legs and arching her back and for a long time this is how she moved across the carpet.  She learned to crawl by the time she was 10 months.  She has always been determined to do her thing, her way and this was no exception although there were times I wished she could see where she was going so she didn't hurt herself by running into the couch or the TV stand. This also gave her a very attractive bald spot on the back of her head.   

Abby at 5 months old

Abby hating her tummy time!  :)  We made her do it everyday anyway!
Abby at 8 months.  Standing on the stairs!  :)
Her eyes were good most of the time but at other times they wandered substantially.  One of the dangers of not treating a wandering eye is that the good eye will become too dominant and make the weaker eye eventually go blind if left untreated.  She hated the patches and would always try to pull them off so we had to resort to some eye drops that helped dilate her eyes.  
Her first surgery did a lot to help her see.  She was always a smiley baby but after her eye surgery she was really able to interact better with us.  It was a marvelous thing!
She is wearing 0-3 month clothes here.  They finally fit!  :)
Abby standing with Daddy's support at about 7 months.  All of her clothes were too big for a long time.

Abby was so small that preemie clothes didn't fit her for a long time.  In the hospital she didn't wear clothes for a long time because nothing was small enough.  She had blankets that she was wrapped up in and a warming bed so that she was nice and warm.  By the time she got out of the hospital, she weighed just 5 lbs 6 oz.  Huge compared to what she had started out as but still very small for a normal baby.  Finding clothes for her was difficult at first but we slowly collected them during her months in the hospital.  We also had two baby showers for her and we received many outfits.  She was still in size 6-9 months when she was a year old so each of her clothes got plenty of wear.  What a little cutie pie!
The months flew by once Abby was home and there were many changes in store for us.  We were so happy to have our girl home and it was time to think about growing our family again.

Friday, December 9, 2011

The Miracle of Ordinary Days - Part 14

Home was everything we had hoped for and more.  It was also challenging.  When you bring a baby like Abby home you worry about every little thing.  You sometimes wish for monitors so you can see that she is doing okay.  Luckily, we had purchased a co-sleeper which is a bed that attaches directly to our bed and is level with our sleeping surface so if in the night I became worried about her I could reach over and feel her breathe in and out without disturbing her.  Sometimes while Aaron slept I would watch her in the semi-darkness and see her little face as she slept and my heart would feel joy. 

Abby and I woke up frequently for feedings but the mixture of breast milk and formula sustained her through the night most of the time.  It might sound odd but I actually slept better with Abby home.  Night time was the hardest time for me while she was in the hospital.   Life got into a daily routine of feedings, appointments, and the daily work around the house.  One good thing about all those months in the hospital was that Abby was already on a very consistent schedule.  Any mom will tell you how nice it is when you know when to expect your baby to be hungry. 
Abby's meal being warmed up and Abby isn't happy!  You can see how big the preemie clothes still were on her.

We were assigned a home health nurse and also a dietitian.  The nurse was very helpful but we determined together that the dietitian could monitor her eating because there was a lot of repetitive care.  The nurse commented that she wasn't used to working with parents like us and it made me sad to think of the babies like Abby with moms who were less diligent in their care.  I had seen some of those moms in the NICU.  I was grateful to be able to stay home with Abby and take care of her needs. 

Our dietitian was great.  She came weekly to weigh Abby and take her measurements and talk about how her eating was going.  We also went to the Feeding Clinic up near Sacred Heart to see if they could aid Abby's efforts with the bottle.  She was still not taking her bottles but liked to breastfeed.  She was getting stronger and continued to gain weight.  We worked together to help her grow.  There were times that the issue of breastfeeding became difficult.  I felt that because Abby was more able to do it that we needed to continue doing it no matter how much milk she was actually getting.  I felt that she was getting a good amount of milk and I would always make sure she also did the bottle for a few feedings a day.  It might be hard to believe that a baby can't figure out how to use a bottle correctly but that is what was happening.  It was like the part of her brain that could do that hadn't turned on yet.  

Abby and Daddy snoozing together.  Ahh, the joys of home!
Later that summer we attended the Martin Family reunion for the first time.  It was fun getting to know all of the family and we had a great time showing Abby off.  Up until that point she was still not taking a full feeding by bottle and she was 7 months old.  Can you imagine how long we would have been in the hospital if we had chosen not to do the surgery?  At the reunion it was like a switch turned on in Abby's brain.  I fed her from the bottle and she took the whole feeding by mouth.  I was sitting with Aaron at the time and we were so excited.  We waited for the next feeding and she did it again!  Our baby could eat!  Hooray!  

She still needed the tube sometimes when she was tired but she soon became able to take all of her meals by mouth.  It is amazing how something that is so easy for everyone else had been her biggest obstacle.  The dietitian found that she was growing steadily so she was getting enough from bottle and breast and we no longer needed to use the tube in her tummy and we no longer needed weekly visits from the dietitian.  It was a relief to claim a little bit more time.  In November, we were able to take her in to have the tube removed and she has been eating well and growing steadily ever since.  

The only other issues medically that Abby has had since being discharged from the NICU is a problem with her eyes.  As she developed, her eyes began to cross and wander (amblyopia and strabismus). We patched her eyes to strengthen the muscles in them.  Dr. Christina Nye is her eye doctor and determined that she was in need of eye surgery to adjust the muscles in her eyes and straighten her eyes out. Abby has so far had surgery three times to correct this, one when she was eleven months old, another around two and another when she was five.  After the months in the hospital these outpatient surgeries have felt routine and hardly worth mentioning.  She continues to see Dr. Nye every 4-6 months and has good vision in both of her eyes with glasses.  Both amblyopia and strabismus can happen to all kids and are not necessarily the result of being premature. 
Before eye surgery.  Her eye would wander all around.  It was a wonder she could see! 

Questions from others were sometimes very hard.  It was hard to explain the things that she was going through.  In the early days home visiting the store was sometimes problematic.  People would come up to us and see how tiny she was and ask the standard question, "Wow, she's tiny, how old is she?"  At first I would answer with four months or five months but I found that answering that way led to questions and long conversations with total strangers.  It was nice to tell her story but sometimes when you are in a hurry it can be a little cumbersome.  I would usually answer with her adjusted age if it was someone that I didn't know.  With others that I knew it was good to be able to share her story.

Our first family picture in December 2003.  Abby's eyes are much straighter.  She is wearing a dress that is for 6-9 month old.  She is 11 months old. 

After all this time has passed no one just meeting Abby suspects that any of these events took place.  Sometimes they wonder about her behavior and I do my best to explain these circumstances of her birth and development to them.  There is rarely time to share her whole story and to explain just how amazing she is.  I hope in some way that these words that I have written about her will serve to help others understand Abby better.   These experiences have made her who she is today.  I realize all the time that I have a lot to learn from her and I am so grateful that I get to do that every day.

Thursday, December 8, 2011

The Miracle of Ordinary Days - Part 13

We had spent a rather long night in the hospital with Abby prepared to go home on the morning of the 19th of May, 2003.  Abby had been fussy all night and we wondered if she was hurting from the surgery she needed to insert the feeding tube into her stomach.  We woke up and were getting ready to be discharged.  I had her clothes laid out to go home in and I opened her diaper to change her.  There underneath her diaper was a large red lump.  Alarmed, I called for Aaron to come over and look at the lump.  We immediately went for a nurse to come and inspect the lump. 

The nurse looked at the lump and she called Dr. Fischer to come and examine her right way.  It was an inguinal hernia.  These kinds of hernias are more common in boys.  Not only did Abby have one hernia where the lump had formed but two hernias, one on each side. They happen in the groin area and do not close on their own.  The only way to repair hernias of that kind was another surgery.  Dr. Fischer assured us because we had found it so early that morning that he would be able to repair it that day and although Abby would have to spend another night in the NICU, barring any unforeseen circumstances, we would be able to take her home the following day.

Needless to say the fact that we couldn't take Abby home was a major disappointment but both Aaron and I felt grateful that it had happened when we were still at the hospital and not already home.  It would have been so much more discouraging to have made it home and then have to return to the hospital again the next day with a hurting baby in need of surgery.  I think Heavenly Father knew we were reaching the end of our patience and our strength.  Another blessing was that Abby would not have to go under anesthesia and be on the vent again.  She would be able to have a spinal block during surgery so the dreaded vent could be avoided and not delay her coming home with us.

Once again they prepared Abby for surgery to repair both hernias.  Once again it was stressful for us but the procedure went well.  One more night in the NICU and our girl would finally be free!  The next morning we arrived early to see how Abby was doing and this time she was ready to go.  She'd slept well during the night and was a happy baby once more.  I got her clothes arranged to change her into her going home outfit.  I went to change her diaper once more and opened her diaper to find a great deal of blood coming from her incision. 
I had seen Abby go through many things but bleeding was not one of them.  For the first time in my life, I got dizzy and speechless and had to sit down because I felt like I would pass out.  Aaron helped me get to a chair and went to find a nurse to help us and I sat trying to take deep breaths to calm myself down breathing through a few more tears. One of her stitches had burst and that is what had caused the bleeding.  They quickly closed the incision again and covered  it up and we got her diaper changed.  My mini-crisis over, I helped Aaron finish getting Abby dressed in her outfit and ready to go home.  Aaron brought the car seat to set her in it and it was time to go. 

She was very light because she was no longer connected to any wires.  They had been so much a part of her that it felt odd to carry her around with nothing streaming behind us.  No oxymeter was attached to her foot.  She had no leads on her chest to monitor her breath rate and heartbeat.  She didn't need them any more!  We had been preparing for this day for so long that when the time finally came to leave, it was surreal.  We said goodbye to everyone that was there and thanked them.  A nurse accompanied us to the car and we got Abby's car seat situated in the back seat.  I rode in the back with her so that I could watch her and make sure she was okay as we drove and we pulled out of the hospital parking lot.  You can imagine the joy that we felt to get to leave with our baby!  Such a feeling of elation overtook us that we both let out a cheer.  We cheered for a few blocks and laughed and filmed Abby's ride home on the video camera.  It was a beautiful day! 
Abby in her car seat ready to come home

We pulled up in front of our house and took Abby down the stairs to our basement apartment.  We took pictures of her there in her car seat and then took her out to hold her.  It was a blessed moment, just the three of us, in our own house after so many months of waiting.  It was the 20th of May 2003, just one day short of four months after her birth. We had brought our sweet Abigail home to stay and it could be just the three of us with no monitors, no alarms, no doctors or nurses.  It was the end of our NICU journey with Abby but the beginning of so many other beautiful days, obstacles and triumphs for our little girl and for our family. 

Abby sleeping in her bed for the first time.  One of my favorite pictures, ever. 

That night we had some visitors.  My brother Matt and his wife Rachel and my sister, Emily came to see and hold Abby.  There was a sweet feeling in the room as they held her for the first time.  They were so quiet around her.  It was just perfect.  After months of not seeing her we finally got to introduce them all to each other in person.  In the days that followed we slowly introduced Abby to other friends, family and ward members that had prayed for her during her time in the NICU.  We were careful with her for obvious reasons.  I wish I could replay each of those encounters for you all.  There was so much love and joy when she finally came home.  It was truly a sweet and blessed time as she interacted with those that had worried and cared about her with us. 

My brother, Matt and sister, Emily feeding Abby for the first time on the night she came home from the hospital.
My sister-in-law Rachel with Abby on the night she came home from the hospital.

Abby's journey through those early months was difficult.  Once she came home, life became sweeter.  It was like holding our collective breath for months and finally being able to exhale again and then we started to breathe again and breathing felt so good. Many more things have happened in the years since that are also part of Abby's story but these early months defined us in a way that I am only now beginning to appreciate.  

I think that experiences like the one that we went through with Abby make us more understanding, increase our empathy, remind us of the tender mercies of God, built our faith, give us hope, teach us joy and give us new purpose.  Personally, they helped me see that each child is precious.  I think we all know this but when you see a baby grow from such a tiny, fragile state you gain a new appreciation for healthy, happy pregnancies and chubby, roly poly babies.  

Abby with her Grandpa Borders a few days after coming home from the hospital.
We kept Abby home for about six weeks from church and on July 6th, Abby was given a name and a blessing.  It was a joyful day for me and filled with many tears of gratitude.  It was also a fast Sunday and during testimony meeting I shared a scripture that sums up my feelings about that time very well.  It was one that gave me a lot of comfort through those months in the hospital.  
The scripture is from The Book of Mormon, Mosiah 24 verses 13-17: 
13 And it came to pass that the voice of the Lord came to them in their afflictions, saying: Lift up your heads and be of good comfort, for I know of the covenant which ye have made unto me; and I will covenant with my people and deliver them out of bondage.
14 And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.
15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

16 And it came to pass that so great was their faith and their patience that the voice of the Lord came unto them again, saying: Be of good comfort, for on the morrow I will deliver you out of bondage.

I stand as a witness of the truth of this scripture.  He does visit us in our afflictions, large and small.  He does ease our burdens and make them light.  There is great power in the faith of many joined together in prayer and fasting.  There is still hope when all seems to fail.  Faith makes seemingly impossible things possible.  There is comfort for us all when we ask for it.  I know these things because I experienced them first hand. I know that happened because of our faith and the faith of our friends and family.  Our faith didn't make all of our problems vanish or make Abby instantly healthy but it gave us the strength to endure that long time even when we felt like we could endure it no longer.  This is how faith grows.  We put forth a little and so much more comes back to us.  It's a beautiful thing. 

The Miracle of Ordinary Days - Part 12

Waiting for Abby to be ready to go home was hard for us.  We had been through three months and three weeks of the NICU and were ready to take Abby home.  She had miraculously jumped every hurdle placed before her.  Now there was only one thing left that was keeping her from coming home and that was being able to eat all of her food by herself.

 It had been a frustrating process.  We loved her and felt she would do better when she came home.  We tried everything we could think of including staying over night so that I could feed her on demand.  She was still so small and unable to eat enough to gain weight by herself.  It was very discouraging. We had hoped many times to be able to bring her home but we really wanted to bring her home first by my birthday, April 17th and then by April 20th, Easter Sunday.  We bought her an Easter dress and dressed her up in it that day.  Preemie clothes were still huge on her but the dress looked beautiful.  It signaled good things to come.  She also achieved another amazing milestone.  That day she officially weighed in at 5 pounds! 

Easter Sunday in her pretty Easter dress.  Five whole pounds!  :)
Going home with an NG tube would not be possible.  The proper insertion of the tube is critical to a baby's well-being and there are great risks to inserting it incorrectly including perforation in her esophagus or stomach and the aspiration of milk into the lungs that could cause pneumonia and death.  We were approaching four months in the hospital and a conference was called to discuss the options that we had.  We all agreed that Abby would do better at home.  Their proposal was to surgically insert a g-tube into her stomach to help give her feedings and have her monitored by a dietitian and a home health nurse.  The other option was to wait to bring her home when she could take all of her feedings by mouth which could be days, months, years away. 

Surgery was a difficult prospect for us.  You never want to willingly let a doctor cut into your child.  We saw that Abby was stuck where she was until she could overcome this obstacle.  The best feeding she had ever done by bottle was 2 ounces of food.  Some days she couldn't even do one ounce by bottle. We were never sure how much milk she was getting by breastfeeding.  She could not gain weight with such a small amount of food.  The only way to determine it was by weighing her before and after feeding which was also tedious.  They gave us time to but we were supposed to make a decision.  We were fortunate to talk with our friend Laura who is a very experienced nurse.  Her advice was unequivocal.  "Do the surgery and get that baby home where she belongs."  After talking with her we realized it was what we must do. We told them that night and they scheduled the surgery for the following morning.  With any luck Abby would be able to go home the day after surgery.

Abby's g-tube.  We kept gauze around it because it tended to leak.  I know it is kind of gross but it kept her alive! 

Milk going into the tube.  Again, kind of gross but it kept her alive and growing!
We met Dr. James Fischer the following morning and immediately felt comfortable with him doing Abby's surgery.  He was just awesome, really caring and attentive to our questions and concerns.  He talked to us about the risks and benefits and they took Abby back for surgery.  Sending her off was hard but we knew she was in good hands.  The surgery was a simple procedure and it went very well.  Abby was sedated and put on the vent for the procedure.  She had some trouble coming off of the vent and waking up but once she did we were shown how to use the new tube in her stomach.  It was quite amazing and a little disturbing to have a hole directly leading to her tiny stomach.  It had a plug similar to that on a blow up beach ball that you pulled out to add the food into. We could insert a tube into this tube in her stomach and feed her without every having to touch her mouth.  We would do as much of her feeding by mouth as she would eat and then give her the rest of her food through the tube.

That night we stayed at the hospital to "room-in" with Abby.  It is the standard procedure for babies going home the next day and we were excited!  Excited doesn't even begin to cover it. Ecstatic!  Finally we would bring Abby home and she would not have to be in the NICU anymore!  Life would get back to normal and we could enjoy being a family alone for the first time.  I was emotional that night, getting to hold and rock Abby and be with her as long as I wanted to.  We took turns holding her and both woke up with her when she cried.  The night went pretty smoothly except that Abby was crankier than we had ever seen her.  It wasn't her normal behavior.  She was normally really calm and I worried that her surgery incisions were hurting her.  Regardless of the crying, that night together was the promise of many nights to come and we couldn't wait to take her home. 

Unfortunately, there was one more unpleasant surprise in store for us all...

Wednesday, December 7, 2011

The Miracle of Ordinary Days - Part 11

On March 15th, my brother Andrew returned from his missionary service in the Washington DC South mission.  Abby was stable at that point but was still not able to have visitors so we arranged for the family that had not been able to see her to come to the glass room in the NICU and view Abby through the glass.  To do this she had to be taken off of her monitors for a few minutes and carried in.  The nurse accompanied Aaron so that Abby would have someone to help her if something went wrong.  Luckily, nothing did.  After almost two months of waiting, it was fun to let everyone finally get a glimpse of her.  I stood out with my family while Aaron brought her to the glass.  Everyone took pictures and it was a great day.  Abby had only met Aaron and I and her four grandparents.  She had no idea how many family and friends were waiting anxiously to meet her.  It was fun to finally be able to show off our little girl if only for a few minutes.  Her family was very excited to see her. 

The NICU became my home away from home.  I got to know every nurse in the place.  I was there so much that many of the nurses told me that I should go back to get my degree in nursing and join them there.  As flattering as that was I didn't always like being there.  Life was on hold.  The days and weeks seemed to drag on.  It felt like we would never leave the NICU.  January had passed and so had February, March came and went and April was upon us.  Abby had made steady progress through that time gaining weight with no life threatening issues.  She was still on oxygen but needed less and less.  Her food intake was increased.  She was good at nursing but really bad at the bottle.  An occupational therapist named Liz worked with her often to help her work on feeding.  Nursing exclusively wasn't an option as nursing wore her tiny body out and I couldn't be there for every feeding so figuring out the bottle became critical for her to gain the weight and take the feedings that she needed to go home.  She had a difficult time figuring out the bottle so everything that she could not eat by mouth she would get through her NG tube. 

Abby with us some time in early March.  One of our great nurses, Wanda, gave her the hat and the little bunny for her bed.  Abby was a favorite among the nurses because she was so small and sweet. 

During this time we saw people we knew come and go through the NICU.  It was nice to see them but not in that situation.  My friend Tawna had a baby during that time and another friend Shiela also came to be with her baby.  Shiela was there for a few weeks in a different room from us.  She very sweetly watched over me and asked me about Abby.  She gave Abby a bear to sit in her bed with her.  Common experiences bond people together like nothing else can.  We have stayed NICU buddies ever since. 

In April, we were moved to the Intermediate Care Nursery, lovingly called the feeding and growing nursery.  Oh, blessed day!  Abby was no longer critical but still did not meet the requirements to go home.  The feeding and growing nursery was like heaven after the months of the NICU.  It was a quieter and more peaceful environment.  The pace there is much slower, the care times longer.  We could finally sit with Abby for a half an hour or more at a time without interruption.  It was like heaven after those short visits we had at the beginning.

There are a few requirements for a baby to be able to go home from the NICU.  They need to be able to maintain their own body temperature, they need to be free from central apnea spells for at least 24 hours, and they need to be able to take all of their meals by bottle or breast and be growing at an appropriate rate.  Apnea is scary even when you get used to it.  The premature nervous system in these babies has a difficult time maintaining steady breaths and heartbeats.  This causes the baby to stop breathing and the heart rate to plummet.  It is very common and is usually very temporary.  The first couple of times it happens it is particularly scary but after that you learn quickly how to stimulate the baby back to normal breath patterns. 

There are two main kinds of apnea and these two can happen at the same time, central apnea which is caused by the immature system and obstructive apnea that is caused by the tiny airway being obstructed.  Tilting the babies head the wrong way can cause it.  This usually happens during a feeding when the baby is trying to suck, swallow and breathe at the same time.  At this point Abby was doing well with these things.  Her central apnea spells had stopped for the most part and her obstructive apnea spells were very minimal.  Her problems with eating continued but there were a lot of firsts that we got to participate in with her that were so precious.  One of the best was when she received her first real bath.  She had been given sponge baths since birth because of her sensitive skin and the many IV's etc. so it was fun to help with that.  There was also more time to play with her and interact. 
This is her first bath.  Can you tell she didn't like this very much?

Abby snoozing. :)

Abby surrounded by her cuddly friends, including bears from Daddy, Grandma B., Shiela Lee and a sheep from me.
Quiet time with Daddy near the window.  Doesn't that just melt your heart?
Her due date came and went with little fanfare.  Most babies are able to be discharged somewhere around their due date.  Abby was still struggling to grow.  Her caloric intake was increased by adding formula to the breast milk.  We learned quickly that breast milk alone would not be sufficient to increase Abby's weight.  I still pumped through the day to keep my milk supply up for her.  She was doing well but still not eating enough by mouth.  Part of the problem was her tiredness.  Everything wore the poor kid out.  I breastfed and she got tired.

We tried every nipple for the bottle known to man.  Our occupational therapist went all over town to find every new nipple she could.  Once we found the right one we couldn't get through a feeding by bottle without an obstructive apnea spell.  She could only do a little at a time never more than one ounce.  My mom guilt returned full force because I knew that she enjoyed breastfeeding and did the best at it.  I felt sad that she couldn't do such a normal, natural thing.  It was hard for me that she was not strong enough to get all of her calories through that.  As with so many other milestones that Abby has achieved both in the hospital and still today, we learned that there would be no rushing her to achieve our purpose.  She would take her time and do it when she was good and ready.  It is a humbling message from one so small.   

These days tested our patience.  We felt like our desire to take Abby home with us was a reasonable one.  We prayed that she would be able to figure out how to eat without the aid of an NG tube.  She didn't like her NG tube and frequently would pull it out and make herself sneeze like crazy. Who could blame her?  I can't imagine how uncomfortable it would be to have a tube go from your nose to your stomach.  She didn't need oxygen anymore.  There were no more apnea spells.  She had grown past all of the other obstacles.  This was the only thing keeping her from coming home with us.  During this time we were relocated into some new rooms in the back of the NICU that had recently opened up because the Intermediate Nursery needed some maintenance done on it.  It was strange to return to the NICU and not be in the same room.  Our friends had all been discharged and we had interesting new neighbors.

The day we moved into that new nursery I went in for Abby's regular care time and was having some mommy/daughter bonding time when another mother came into the room.  She was raging at the nurse and clearly frustrated.  She was yelling and ranting and raving.  It was quite a show.  I sat very calmly and watched the scene from my rocking chair.  She was telling the nurse how unfair it was that her baby had to be there.  She didn't understand why he had already been there for three days and still couldn't go home.  The nurse did her best to explain and to comfort her and calm her down and left the room. 

I still sat very quietly rocking Abby to sleep.  The other mother stood looking at her baby and then turned and said something like, "I hate that my baby still has to be here.  I don't know why they are making him stay. He was supposed to go home yesterday.  I want him home."  I nodded at her and told her that I could understand that.  She went on to tell me that they were keeping him because he was born a little early and was having apnea spells but that she felt he should still be able to go home anyway. 

I listened and talked to her about why they were keeping him, repeating what the nurse had just been saying to her. She had clearly not heard what the nurse was saying because she looked at me like I was giving her new information.  She went on about the NICU and how much she hated being there.  She calmed down after a few minutes and introduced herself and asked me my name and then asked about Abby and her progress. 

I remember she asked, "How long have you been here?"  I realized that she was seeing my much older looking baby and thinking that we had only been there a few days also.  I smiled at her and answered, "About three and a half months."  The look that she gave me next was priceless.  Her jaw dropped and she didn't speak for a few seconds.  She looked sheepish and exclaimed, "Oh, honey, I must sound like a total witch to you." And then she started to cry.  I reassured her that I understood.  She apologized to me for the way she acted and we talked for a few more minutes until the nurse came in.  Before she left she turned to me and wished both Abby and I good luck with a pleasant smile on her face.  It was good to be able to provide some perspective to a mom going through a hard time. That whole encounter still makes me chuckle. 

Abby loved her hands and would always have them around her face.  She liked to pull out that pesky NG tube, too.
The NICU is just hard, no matter how long you are there it is a difficult experience and I can understand why some parents loath their experiences there.  I think I gained an unique appreciation for the work that the doctors and nurses do because they had done something so miraculous for us.  They had taken a tiny one pound baby and given her the care that allowed her to live and helped her grow into a healthy baby.  It was a miracle, plain and simple and I suppose the miracle of it made the waiting worth it.  We would eventually take our baby home with us but our journey in the NICU was not completed and life still had a few more surprises in store for us all.

Tuesday, December 6, 2011

The Miracle of Ordinary Days - Part 10

Life in the NICU became a daily routine of care times.  Abby continued to grow.  They inserted an NG tube (nasogastric tube) and began giving her the breast milk starting with 1 cc (ml) of milk.  Anyone who knows measurements can tell you that 1 cc (ml) is a very small amount, about one drop from a dropper.  She tolerated the milk well.  Babies that small can develop problems with their intestines when milk is introduced because their digestive tracks are not fully developed.  The baby we shared our room with had problems with this.  We felt grateful that Abby was free of this problem. 

The biggest issue we faced at this time was the ventilator. The longer the ventilator is needed the more likely there will be long term damage done to the lung tissue causing chronic lung problems.  It became a process of weaning Abby off of the ventilator.  Every day we would get an update of how far they had been able to wean her down.  She was doing some breathing on her own over the top of the ventilator but she still needed it.  Some days she would do really well, other days she would be tired and not do as well.  I looked forward to the day that the ventilator could be removed because it would mean holding her, feeding her and all the things that all moms look forward to doing.  Up until that time the most holding I had done was a brief pick up and set down while helping the nurse change her bed.  Her small size and fragile lungs made holding her with the ventilator attached unwise and possibly dangerous to her.  

On February 16th, they took Abby off the ventilator.  She was 3 weeks old and weighed just 1 pound 15 ounces.  She had a nasal cannula that gave her the oxygen she needed.  It was finally time to hold her.  That night was a great night.  We were told that I could hold her but that too much stimulation might hurt the objective to keep her off the ventilator.  Luckily, I have a very understanding husband who knew that I needed to be the one to hold her. 

The nurse lifted Abby off her bed and set her on my chest close to my skin.  This is called kangaroo care which requires skin to skin contact between mother and baby.  Her little body was so tiny and bony but tears of joy came to my eyes as I held her.  I could feel that her breathing was labored but her oxygen saturation remained steady.  It amazed me what those tiny lungs could do.  What a little fighter!  I think those five minutes or so of having her on my chest healed a lot of the hurt my mother heart had endured for the months before.  Those moments were beautiful and amazing but were not to last long.  She stayed off the ventilator until the following morning and was too tired to continue breathing without support.  Our final days with the vent were not behind us and it was discouraging.  I felt bad that Aaron hadn't had the chance to hold her. 

You can see in these pictures that I am still wearing gloves. She had not yet reached the golden 1000 grams (2.2 lbs).
We look very happy though, don't we?

Something else happy did happen during this time.  On February 19th, Abby reached 2 pounds.  This might not seem like a big deal to anyone else but for us it was huge!  It had taken her a month to do it and we were very excited.  We had a celebration dinner to celebrate.  My parents, my brother Matt and his wife Rachel, my sister Emily and Aaron's parents and sister Chantel were all there.  My cousin Becky and her husband Chris also attended.  Becky was 9 months pregnant with her first child and ready to give birth any moment.  She was having some contractions that night and we had fun watching her belly tighten and release. It was a strange feeling for me because I was supposed to be due a full two months after her.  She good-naturedly teased me about having to beat her to it.  I teased back by saying I was just really competitive like that.  She gave birth to her daughter the next day on February 21st exactly one month after Abby.  It was a happy night.

The ventilator continued to be our problem.  It was a blessing because it was keeping Abby alive but we needed her to be able to get off of it as soon as we possibly could.  There are hard decisions for parents to make in these situations and after almost two weeks of unsuccessfully weaning herself off of the ventilator the doctors came to us to tell us that they thought she needed a boost of steroids to help her get off of the vent for good.  They gave us the statistics once again about possible long term effects the drugs could have on her.  It is hard being a parent when there is no way to know what the outcome will be.  We decided that getting off the vent was crucial to her getting the love we had to give her and also the best for her medically.  They gave her the steroids and took her off of the vent for the last time on the 28th of February, 1 month and one week after her birth.  She would still need supplemental oxygen for a while via the CPAP first and a nasal cannula after that but the vent was gone and we would be able to hold her on a more regular basis.

Abby off the vent in an oxygen hood.  This is the first time we saw her face with no tubes or vent covering it.            What a beauty! 

No more vent!  :)  Hooray!

Abby with her daddy!  Finally!  :)

 Off of the ventilator Abby quickly became more interactive.  She was still not quite like a regular newborn but she was a lot closer.  It is hard to explain how much more connected you feel to a baby you can touch and hold and love.  She was still fragile and small but she was able to do more.  She still was getting her meals by NG tube.  It was time to start nursing and giving her a bottle.  It amazes me now that she would be able to do this but we made our first attempts a few days after the vent left.  She had feeding issues with the bottle but was great with breastfeeding.  Not a normal thing for these little ones.  Normally the bottle is much easier to get the hang of because the milk comes out easily.  Feeding time was also the main time when she would desat (her heartrate would drop).  Her numbers would go down on the monitor and we would have to help her by sitting her up, rubbing her back. We would have to watch her closely as she navigated how to suck, swallow and breath all at the same time.  It is not something that an older baby has to worry about but for a baby still two months from her original due date just the fact that she was able to try was impressive. 

I love the way he looks at her.  Big hands, tiny head.  Sweet!

  The difficult days of the vent were over but there were still many obstacles to overcome before we could take Abby home.  We had been in the NICU for a month and a half and had navigated some pretty treacherous waters.  We hoped for smooth sailing and for good news but our days in the NICU were not over.  There were still more adventures in store for us.

Sunday, December 4, 2011

The Miracle of Ordinary Days - Part 9

This is Abby at three days old.  See how small her head is?

You can see the size of my fingers against the size of her legs.

Abby at 3 days old.  I am applying some shiny moisturizer to her skin to help keep it protected.

The first days after I came home were difficult for me but Abby was doing well.  Luckily, the nurses at the hospital were always there so that if I wanted to check on Abby, even in the middle of the night, I could call her nurse and see how she was doing.  Calling and finding out she was doing well made me sleep better.  The nurses offered such vigilant, constant care that I knew that everything that should be done was being done.  It did a lot to help ease my troubled heart. 

The Relief Society in the ward arranged rides for me because I could not drive myself to the hospital.  The sisters were amazing.  Many of them had fasted and prayed with us for Abby and it was comforting to know that people wanted to help us.  It was hard to share in the experience at the time because so much of what we were going through was hard to explain.  These were the days before we owned a digital camera so all of our pictures were on our camera.    The one picture we had of Abby was taken right after she was born and the few people that we had shown it to were obviously concerned by her small size.   It seemed better just to give people updates as they asked for them and not to give too many details.  The details were overwhelming to us also so it was better just to say, she is doing well for her size.  I suppose this should have been scarier but it really wasn't like that for us.  That peace we felt was constant.

The first day after returning home was a memorable one for me.  I visited Abby that morning and did her care time.  I was still worried about her but she was making progress.  She graduated that day to another ventilator  for more "advanced" babies.  I saw Dr. Johnson in the hall and gave her the update.  She was happy to hear of Abby's progress.  I remember that I cried a lot that day.  Post pregnancy hormones and worry are apt to make any girl weep. 

I watched other people walk around the hospital like it was just another day.  When someone you love is sick or in the hospital in critical condition life slows down dramatically.  I feels almost like an affront that the rest of the world moves forward at a steady pace.  I remember having the urge to yell at people walking by and saying, "Don't you know my baby is in the hospital?"  I sat in the chapel in the main part of the hospital and cried and prayed.  I bought Abby a little sheep that could sit at her bedside to watch over her while I wasn't there.  Later that night Aaron purchased a Husky bear for her so that she would have something from him also.  

Abby's condition didn't change much in the days that followed.  She was growing little by little although extremely slowly.  She would get little infections and be given antibiotics to treat it.  We had one anxious night when she had a small bleed in her brain but after another blessing, that resolved itself quickly.  She was amazing to watch.  It was amazing to watch her change.  She was not like a baby that was full grown.  We were able to watch her change and grow before our eyes. 

My days were spent in the hospital.  I would get there for her early care time and stay through the day to be there for as many care times as I could.  In the early days, she had care times every three hours.  I would go home in the afternoon and Aaron and I would usually return for the feeding at night.  Aaron was there every time he could get away from school and work.  My other main job was to pump breast milk for Abby.  She was not able to eat it at the time and wouldn't be able to take a bottle or breastfeed until she was off the ventilator but I needed to keep my milk supply going so that she could have it when she needed it. 

I felt glad to have something to do for her because I was not able to care for her full-time.  I was careful to store my milk in the freezer and had a good supply for her waiting to be used.  I was supplied a pump for home use and pumped every few hours.  There was also a private room for it outside of the NICU.  Anyone who has done this for any length of time knows how draining it can be (forgive the pun).  It was hard to keep up with, especially during the night.  It was at those times that I missed Abby the most and wondered how much different it would be to have a baby born on time where you would have a little one to nurse instead of meeting up with the breast pump. 

The days in the hospital were greatly helped by getting to know other moms that were in the same situation.  Each room shared a care time so there were several moms that were there with me at the same time and waiting in the waiting room.  A few days after Abby was born a little girl joined her in the room that was born at just 24 weeks gestation.  She weighed in at 1 pound 7 ounces.  Her parents visited her regularly and I got to know her mom, Shannon very well.  We kept up on the latest status updates of our babies and I think it helped me a great deal to have someone to talk to who was going through the same thing. 

After a few days the umbilical line was taken out and instead Abby had an IV line placed in her arm.  One of the difficult things in babies so tiny is that it is hard to access their veins and the ones that are accessible collapse easily and must be changed often.  This is a fact of the NICU and of the kind of care she needed.  The only time this was upsetting was the day when I came in the room to find that she had an IV in the top of her head.  I was not prepared to see it and I burst into tears.  I left the room for a minute to compose myself and when I returned the nurse explained that it was the only accessible place she had that day and that she was sorry that it upset me.   I learned early on that I needed to be prepared for anything when it came to her care but that was a shock to me. 

The support of the ward continued and I was grateful to have good friends there.  My visiting teachers were particularly helpful at this time.  Jennifer Leeds and Beth Child had come to the ward at the same time that we had and we became fast friends.  They came to see me in the hospital before Abby was born and brought games to play.  Jenn helped me clean my house when I was on bed rest.  Beth had gone through the NICU experience the year before with her son Elijah and knew first hand the experience that I faced.  It was great to have someone there who understood even if we didn't talk about it all the time.  It was comforting to know that they were there and I was grateful for their friendship.  I felt that our Relief Society President was inspired to make them my visiting teachers at that time.  They were definitely the right sisters at the right time for me and I will always remember them fondly for the service and friendship that they gave to me at that time.

One particularly sweet memory of this time was a conversation that I had with a dear older sister in my ward.  She stopped me in the hall one Sunday to ask me how Abby was doing.  When I told her that she was doing well, she told me that she was so glad.  She had been praying for us and for her.  She then shared an experience that amazed and humbled me.  She told me of her own little son that had been born too early.  In those days no intervention was done.  He weighed just over one pound.  She had held him while he died in her arms.  We both shed tears as she talked about him and I told her how grateful I was that she had told me about him.  She said that she was glad that Abby had a chance to live and that she missed her little boy.  Fifty years later his memory brought tears to his mother's eyes.  Later that night I remember sitting with Abby and thinking of this sweet friend and so many other moms over the centuries that have had to let their little ones go when they were born too young and I felt grateful to live in a time when Abby could be saved.