Week 5: Feb. 17th - 23rd

 

Day 31: Monday, Feb. 17th
I got to hold Landon today for the first time since he started getting sick.  He was so sweet.  He fell asleep in my arms while his isolette was being changed.

 They tried placing a PICC line in three different places and they all failed, so he still has the IV and they will try again tomorrow.  He's still getting Lasix for fluid retention as well.  He was up to 10 mL every 4 hours on his feedings though, so that is good news.

Day 32: Tuesday, Feb. 18th
Today is Landon's one-month birthday.  I can't believe it has been a month since he was born.  One month in the NICU down, and hopefully only two and a half left to go.  It's tremendously hard for me to think about him not coming home with me until May.  It's hard to be away from him, not be able to take care of him, and watch him struggle with growing and all of the medical equipment to which he is attached.  It will just be that much sweeter when he gets to come home!

I made Landon this quilt to cover his isolette for his 1 month birthday.

Landon had another transfusion tonight due to low levels of hemogloblin.  His weight is down a little to 850 grams, and he looks a little swollen again.  I got to change a poopy diaper tonight---I loved it!

Day 34: Thursday, Feb. 20th
Landon is doing about the same today.  His CO2 levels are up, so they had had to increase his ventilator needs.  The glycerin enema from last night worked and he has been pooping again, so they increased his breast milk feedings to 14 mL every 4 hours--that is about half an ounce.  Last night he weighed just over 2 lbs, and tonight he is 2lb 1oz.  He is also now measuring 13 3/4 inches long. 

The doctor says infections just affect his little lungs and immature immune system differently from ours.  You can't say that ten days of antibiotics will cure it, because there are other far-reaching effects from the infection that make it even more difficult for him to fight it off.  This includes the damage that the infection has done to his lungs and the fact that they are now filled with fluid.

I pray he will be strong and keep fighting the infection and that his little lungs will grow and get healthy enough to come back off the ventilator.

Day 37: Sunday, Feb. 23rd
Landon had to be started on a drug for yeast yesterday because they found white spots in his throat when they changed his endotrachial tube.  They are going to keep his PICC line in to continue the antibiotics to fight the bacteria in his lungs for a few more days.  They also began fortifying my milk with calories today to help him gain weight more quickly.  He is getting full feeds now--18mL every 4 hours--with 22 calories added to each feeding. 

I can definitely tell that he is getting bigger.  There aren't as many wrinkles on his forehead, and I can't see his entire rib cage as pronounced as it was when he was born.  He is still covered all over in lanugo, the soft fuzzy hair babies have in utero, and I tell Mike that he looks like my little spider monkey.  I wish I could carry him around everywhere with me like monkey mommas do! I keep telling Mike that when he comes home with us that is just what I am going to do and I am never going to put him down!

 I hope he knows, or will come to know, that I am his mom with so many people always handling him and nobody to cuddle him and bond with him.  I worry that we've missed out on that bonding experience that moms and babies experience following normal deliveries.  There is so much that I won't get to experience...I won't get to experience all of his firsts-1st bath, 1st diaper change, 1st cry.  I hope we will still be able to bond and connect once he is feeling better so that he knows I'm his mommy and knows how much I love him, and that I would do anything to protect him and keep him safe. 

Week 4: Feb. 10th - 16th

Day 24: Monday, Feb. 10th
I gave Landon a sponge bath in his isolette for the first time today, and he did not like it one bit.  He cried and flailed his arms and legs the whole time.  It was so scary moving him around to clean him because he is so tiny and fragile. When I have to move his head I can feel the big soft gap between his skull bones where they haven't fused yet, and I worry that I will do something to hurt him.  I got to wash his hair with a toothbrush, and it went all fluffy and fuzzy afterwards.

 

All the nurses rave about how cute he is, and one told us not all babies this little are cute but that Landon is very cute.  I think he is the sweetest, cutest baby I have ever seen, and one day he will fatten up and be even more adorable and cuddly then! When I see other babies in the NICU they look like giants in comparison with his tiny body.

We also closed on our new house today.  I am not sure when we'll be able to move in yet, but I am excited to start getting Landon's room ready for him.  Hopefully we will have less than three months to go before he gets to come home now!

Day 26: Wednesday, Feb. 12th
Today was a very rough day.  I woke up to a call from the NICU that they had just re-intubated Landon because his apnea and bradycardia episodes had increased sharply overnight.  They had also ordered CBC and CRV labs, and the results suggested that he has an infection.  Results from more blood cultures and respiratory tract tests will tell us what kind of infection it is.  A chest x-ray showed a foggy part in his upper-right lung, so right now the doctor is thinking it is pneumonia.  Anything that he could have aspirated into his lungs could have started growing bacteria and caused pneumonia.

Mike came home to get me, and we went up to the hospital to see him.  Mike's dad met us up there and he and Mike gave Landon a priesthood blessing.  We went back up to the hospital later that night and Landon had been switched to the oscillator ventilator (the very first ventilator he was on) because his carbon dioxide levels were too high on the other ventilator.  The oscillator provides very high frequency shallow breaths to keep the lungs open and to assist oxygen and carbon dioxide exchange in the lungs.  The machine makes a steady humming noise and constantly shakes the babies chest.  It causes slightly less damage to the lungs than the conventional ventilator which forces the lungs open with each breath.   

Landon also had two IV's in his head, and one of them was actually a blood transfusion.  Noone had told us he was going to need a transfusion, but it was already going by the time we got there.  The transfusion helps with kidney function, hemoglobin levels, and blood oxygenation.  It was a very scary moment to see my little baby with all these new tubes and two IV's in his head--- including one with blood going through it! 



Blood transfusion going into his IV

 



They started Landon on Ampicillin and Gentamycin in the other IV and Lasix (a diuretic) to help with some of his swelling and the fluid in his lungs.  They had to stop feedings during the blood transfusion but planned on starting them up again after it had finished.  Dr. Rich-Denson told us that it's huge that he can tolerate his feedings while he is sick.  Breast milk has important antibodies to help him fight infections and keep him full of the nutrition he needs to help him get stronger.  Lori, Landon's nurse, told us it's her observation that the little ones that continue to tolerate feedings through infections are usually stronger and sturdier little fighters.  I know he is a strong little fighter, it is just so hard for me to see him this way.  No mother should have to watch her baby go through this.  We just continue to pray for him and know our Heavenly Father is watching over him.

Day 28: Friday, Feb. 14th
Blood cultures today came back positive for Staph Aureus infection.  So they changed Landon's antibiotics to Nafcillin and Gentamycin to treat the infection.  They said his condition is looking better.  They've been able to lower his oxygen to about 20% and have started weening him off the nitric oxide.  They gave him Dopamine last night to help with his kidney functions, and apparently it worked because the nurse said he has peed more today  than he has in the last 3 days combined. 

When I got to the hospital, one of Landon's head IV's was out and moved to his feet.  He still looks really swollen and weighs 850 grams--up 20 grams from yesterday.  They did a head ultrasound to make sure everything was ok with the infection, and Dr. Miner said it looked great.  The disputed area from the first ultrasound --that the radiologist said could have been a grade 1 bleed, but the neonatologist said did not look like any bleeding had occured at all-- had now completely resolved, and there were no areas that were ischemic or lacking blood. They restarted his feedings, and he is now getting 3 mL every 4 hours.

I took Landon a card for Valentine's Day with pictures of him with mommy and daddy, and Great-Grandma Lowe sent him one that I took up as well.  The NICU had made a gift for me out of a frame and Landon's footprints in the shape of a heart.  Mike also got me beautiful flowers.

Day 29: Saturday, Feb. 15th
Landon looked much more like himself today.  He was a little less swollen and is starting to get some wrinkles back in his forehead.  He has finally lost some of the water weight.  They are taking him off the nitric oxide tonight as well, which is great.  He looks pinker, compared to the gray complexion he has been all week.  Also, his feedings are up to 7 mL every 4 hours.  I pray he is finally turning the corner and starting to get better.  He was actually alert and active during our visit with his eyes open, and he was sucking on all of his fingers.  I held his binky while he sucked on it for a while and got to change his diaper. 

Day 30: Sunday, Feb. 16th
Mike gave Landon a name and blessing today.  He was really nervous about giving his first blessing as a father, but he did a great job.  We got special permission for our bishop and my brother to come and help with the blessing.  It was really special---even with four other babies and all sorts of commotion going on in the room.

They are putting a PICC line back in tonight, because they have had to poke him so many times and need to keep him on the antibiotics for longer now--10 days now compared with 7 originally.  They are also holding his feedings tonight until he starts feeling better.  He weighed 1lb 13oz, but he still looks pretty puffy.

Week 3: Feb. 3rd - 9th

Day 17: Monday, Feb. 3rd
Landon is almost 1lb 9oz today and his feedings have been increased to 5.5 mL every 4 hours.  I didn't hold him today because I want to be safe since I wasn't feeling well yesterday. His oxygen flow was lowered from 4 Liters Per Minute (LPM) to 3.5 LPM which is great.

The 1.6 lb little baby girl born Friday was gone today.  On Saturday, we heard the nurse crying and telling the mom that she was very sick and they were trying to figure out what was wrong with her.  They had moved her to a private room yesterday, and she was gone today.  It makes me so sad.  This is the most difficult thing I have ever faced, and nobody should have to go through it... let alone go through it only to lose your sweet baby.  I feel guilty when our baby is doing well when other good people, good families, good mothers have suffered a loss of their precious little ones.  I am so thankful to my Heavenly Father that our little one is still with us.  He is our little miracle.

Day 19: Wednesday, Feb. 5th
Landon had some trouble breathing last night, so today his oxygen flow was back up to 5 LPM and the concentration was about 30%.  He had several instances where he stopped breathing (apnea) then his heart rate and oxygen saturation levels would fall, and they would have to go help him recover by turning up his oxygen and rubbing his skin a little to remind him to breathe.  This is really scary for me because he hasn't been doing this up until now.  They took some labs to look for a possible infection, but so far those labs have come back negative and they don't really know why he started doing that all of a sudden.  They changed the time he gets his caffeine and increased his oxygen, and so far it seems to be helping. 

I firmly believe that everything happens for a reason, and everything that happens is a part of God's plan.  So I have finally realized there is a reason that I haven't been able to land a full-time teaching job in the past couple years.  It has been really hard for me to watch so many other people graduate and find jobs.  I have felt like I am just not good enough, so I decided to get my Master's degree and substitute teach in the meantime.  I realize now why I haven't been teaching full time.  My purpose is to take care of this sweet little baby.  I have to be able to pump milk for him every 2-3 hours and need to be able to visit him in the NICU often.  Once he comes home, I will need to stay home with him help him grow and develop and stay healthy and safe.  I also had to spend 16 days in the hospital getting him here.  It would have been extremely difficult to do any of these things if I was teaching full time.  It also would have added a lot of extra stress at an already stressful time.  I am thankful for these little blessings that I am able to notice through this trying time-- things that I may not have considered blessings before now.  It is proof that our Heavenly Father knows what we need better than we do.

Day 20: Thursday, Feb. 6th
Landon has still been having trouble with apnea and bradycardia episodes.  So the nurses put a deeper feeding tube in that goes just past his stomach.  They hope that this will reduce his refluxing and will thereby decrease the number of apnea episodes he is having.  They think he might be aspirating some milk when he refluxes which causes him to stop breathing.  They had to take an x-ray after placing the new tube.  He did not enjoy the procedure at all.  His oxygen is also still up at 5 LPM and they are switching him to continuous feedings so he won't get so much milk so fast.  His feeding rate will be 3.4 mL per hour running continuously.

I held him in his blanket after all this excitement, and he just stayed awake with his eyes wide open the whole time.  He was looking around at things and trying to focus his eyes.  I also got to change his diaper and check his temperature during his care time.  He weighed 1lb 11oz today, so he is starting to get a little bit bigger.

Day 22: Saturday, Feb. 8th
Landon is 3 weeks old today, or 28 weeks gestational age.  Dr. Sheffield told us they are going to take his PICC line out some time tonight.  He should be up to full feedings tomorrow, so they feel it is a good time to get rid of the line--which has been providing supplemental nutrition-- since it adds the risk of infection while it is in him.  I think he'll be happy to be rid of one tube attached to him. 

I got to take his temperature and change his diaper again.  Then I held him skin-to-skin, and it was wonderful.  Mike held him swaddled in a blanket outside the isolette for the first time tonight.  I think he and Landon both loved it. 

   

Week 2: Jan. 27th - Feb. 2nd

Day 11: Tuesday, Jan. 28th
I went to visit Landon today after my doctor appointment, and he seemed to have calmed down a bit from last night.  They had to stop feedings last night, but hope to start them again tonight.  He is down to 1lb 6oz from normal fluid fluctuations.  We've been able to hear his tiny little cry ever since they took out his breathing tube, and he has a teeny little preemie binky that he sucks on to help him calm down when he's agitated. The doctor says he is a "bit of a wild child" and the nurses call him "feisty" because he's been throwing a lot of tantrums flailing his limbs and crying.  They say it's a good sign of neurological development, but it makes me sad when he's so upset and I feel like there's nothing I can do to comfort him.  He might also be still adjusting to not being on the ventilator any longer and that could be agitating him. He seems to like it when I put one hand on his head and one on his feet with a little bit of pressure.

I watched him have his first sponge bath on the web cam tonight.  He looked like he thoroughly did not enjoy himself, and he cried and flailed the whole time.  When the nurse wrapped him up at the end, he fell asleep sucking on his hand.  He is truly the sweetest and most precious thing I've ever seen. 

Day 12: Wednesday, Jan. 29th
I got to hold my baby skin-to-skin for the first time tonight.  It seems like he is always so agitated when we come to see him, so the respiratory therapist said I could hold him since he was awake and bugged already.  She said it would probably help to calm him down.  The nurse brought him and all of his wires over to me and laid him on my chest with his little feet tucked down into my tank top.  This was the first time I got to feel my baby's skin against mine.  In that moment, there was only him and me. Nothing else mattered.  I felt complete again for the first time since they took him out of me.  He curled up on my chest, cried a bit, then he settled down and fell right asleep.  The nurse put a warm blanket over him.  It was the sweetest thing.

1st time holding Landon skin-to-skin

Day13:Thursday, Jan. 30th
Landon weighed 1lb 9oz at his weigh-in last night.  They are hoping to increase his feedings tomorrow, and the goal for right now is to get him to full feedings so that they can get the PICC line out of him.  His PICC line is an IV that goes all the way to his heart to give him his parenteral nutrition and lipids, and he has had it since his umbilical lines were taken out. It is also a source for possible infections to enter in little ones though, so it is important to get it out as soon as possible.

He is starting to look less wrinkly and to fill out more.  I just wish there was more that I could do for him.  He is so tiny and fragile and innocent.

Day 14: Friday, Jan. 31st
I got to change Landon's diaper for the first time today. The little preemie diapers are too big for him, so the top has to be folded down below his belly button.

Day 15: Saturday, Feb. 1st
I got to hold Landon skin-to-skin again tonight.  I love holding him so much! Mike held him in his isolette for the first time tonight.  He wore gloves to hold him and said he was lighter than he thought he would be.

Day 16: Sunday, Feb. 2nd
We didn't get to stay long visiting Landon today because I got nauseous in the NICU while I was pumping and ended up throwing up multiple times.  So, we ended up leaving early.  I think that all of the medicines I am on combined with the pain from my surgery and my lack of rest just combined for the perfect storm.  Before we left, we found out that his feedings were increased to 5mL every 4 hours -- that is 1/6 of an ounce-- I'm so happy that he is tolerating his feedings so well.  I can't wait for him to be on full feedings and have his PICC line taken out.