Still in the NICU

Well, Callum definitely won’t be going home this weekend. He has had a few setbacks so I’m trying to readjust my timeline and my expectations on when we can bring home our baby. His hematocrit dropped to 25, which isn’t too bad (they usually transfuse between 22-24) but he wasn’t feeding well, he was having some oxygen desats and his retic was still super low (meaning he isn’t making his own blood yet) so they decided to go ahead and do the blood transfusion. They put an IV in his foot which made me so sad because it looked really painful. Since it took a while for the blood to be available I went back to the RMH to sleep and when I came back in the morning he had an IV in his hand because the foot IV didn’t work. He had just finished having his blood transfusion when I got there and his skin looked so pink and healthy.

img_4010

He was awake and hungry so I breastfed him and he took a whole feeding without falling asleep, which is awesome! A few minutes later I heard him filling up his diaper so I decided to change him. When I opened up his diaper there was quite a bit of blood mixed in with the poop. The doctor came to look at it and she said he could either have a dairy allergy or he could have something called Transfusion Related Gut Injury (TRAGI) which can sometimes happen in micro-preemies who have blood transfusions. He’s definitely not a micro-preemie so we are hoping it is just a dairy allergy. The timing, though, suggests that it might have something to do with the blood transfusion. The doctor is x-raying his abdomen right now to try to get answers and I’m cutting all dairy out of my diet just in case. They are putting him on gut rest until they can figure out what is going on. Callum’s ferritin (iron) levels are really high on top of all of this. Before the blood transfusion his ferritin level was 1,216 and the normal range is 25-250. Since he was given adult donor blood which has high levels of iron in it, his levels are probably much higher now. They are running liver function tests to see if his liver is being affected by all of this extra iron in his body.

It is hard not knowing how much longer we have to live here in Atlanta separated from our family and our normal life and our sweet baby Callum. And can I just say how absolutely unnatural and weird it is to have a NICU baby in the first place? It’s unnatural to give birth and then never touch or hold or even see the baby for hours after that. It feels wrong for my baby to go through painful procedures without me there with him to comfort him. I show up and he’s suddenly got an IV or he’s had a vaccination, etc. and I wasn’t there to hold him when he cried. It’s completely unnatural to ask a stranger if I can please hold my baby or change his diaper or feed him. I’m his mother. I should be the one giving permission to others if they want to handle my baby. Nora still hasn’t even met Callum and Josh has seen him for maybe a couple hours in the past two weeks. All of this feels off but thank goodness it is temporary. Part of me feels incredibly privileged to even have a baby in the NICU. The one and only dream I ever had of Lucy after she died was of her in the NICU. I was going to visit her and I walked into the hospital, up the elevator to the next floor and down a long hallway to my baby Lucy’s crib. She was so sweet with chubby cheeks and brown hair and oh, I loved her so much. I was so happy to be with her in that sunny little room. Then I woke up to my nightmare…swollen, milk filled breasts and empty arms and a permanently mutilated heart. I was gutted. I begged God not to ever, ever let me dream about her again because I couldn’t stand waking up to my life. I will just wait until heaven. Thankfully He heard my pleas and hasn’t ever given me a dream about Lucy again. It would be too painful. But after I had that dream I struggled any time I heard a NICU mom complain about her living baby who was still in the NICU. I envied her. Now I get to be one of those moms with a living baby in the NICU and I am so, so grateful (and yes, I still complain about the hard stuff.) Even though it is inconvenient, it is stressful, it is exhausting and it feels unnatural, I know we are very blessed to be in this situation. Do you know what is truly unnatural? A mama saying goodbye to her baby for good. A mama living the rest of her life without her child.

So, yes, it is hard and we are exhausted but we are so thankful.

img_3962

Please continue to pray for our baby Callum to get over whatever is hurting his belly, to get better at his feedings and for his blood levels to normalize. We appreciate all of you so much!

Advertisements

Update on Callum

Today our baby Callum is two weeks old and he is doing well in the NICU here in Atlanta. My mom and Nora and I have been staying at the Ronald McDonald House half a mile from the hospital and they have been amazing. I really don’t know what we would do without the RMH. Callum lost some weight after he was born but has now surpassed his birth weight. He is really good at breastfeeding and taking a bottle but he often falls asleep before the feeding is finished so he still depends on his feeding tube some for nutrition. Callum’s bilirubin hasn’t been checked in a week and his hematocrit was last checked a couple days ago so I have been pushing for them to recheck those levels soon. A few of his doctors and nurses have been very nonchalant about his HDN (hemolytic disease of the newborn.) Occasionally I have to remind them that this isn’t typical preemie jaundice or normal iron deficiency anemia. It can be a very sneaky and dangerous disorder if not followed closely. I know babies who have died from HDN and many others who have permanent brain damage because their HDN was not treated appropriately after birth. Anyway, I’m hoping that the doctor will recheck Callum’s bilirubin tomorrow and his hematocrit soon. I really wanted them checked today but the doctor didn’t want to for some reason. The doctor feels pretty sure that Callum won’t need another blood transfusion but I think he will need one by the end of the week and probably at least one more in a few weeks. His retic is still basically 0 (I think it was 0.1 the last time they checked) and his hematocrit was 26 a couple days ago. They said they would transfuse when his levels got to 22-24 and since his retic shows us that he isn’t making his own red blood cells yet, we can be fairly certain that he will need a transfusion soon.

We have been working through the checklist we were given of things to complete before Callum can be discharged from the NICU (CPR class, follow up pediatric hematologist appointment scheduled, etc.) The doctors and nurses are hopeful that he might be able to come home by this weekend! Callum will be doing his carseat test tomorrow to see if he can handle sitting in a carseat for an hour and a half without struggling to keep his oxygen up. We are so thankful that he is doing well and getting close to coming home! It will feel so good to have our family all together again. I miss Josh and the boys so much. Nora still hasn’t been able to meet Callum since siblings age three and under are not allowed into the NICU. I cannot wait for her to meet him. She is going to be obsessed with her baby brother.

I am still working on Callum’s birth story so hopefully I can finish that soon! Here are a few pictures of our baby Callum from the past week:

 

 

Callum Joseph Thomas Weathersby

Surprise! Our miracle baby is here. Callum Joseph Thomas was born exactly one week ago at 34 weeks and 4 days via emergency c-section. He weighed 6lbs 6oz and was 18.5 inches long. I went in for my last IUT and ended up having a baby instead! This week has been an absolute blur and I am just now able to sit down at a computer to quickly update everyone. Baby Cal needed some breathing assistance at first but is now breathing on his own and is doing great in the NICU. I just moved into the Ronald McDonald House in Atlanta to be close to Callum until he’s discharged. I will write all about Callum’s birth story in my next blog post but for now, I’ll leave you with a few pictures of our sweet boy. Thank you all for praying for us! We are so thankful that our baby is here alive and well.

My first quick look at Callum before he was whisked away to the NICU

Finally able to get on my feet 12 hours after the c-section and go see Callum in the NICU.

Holding Mommy and Daddy’s fingers

Daddy’s first time holding Cal

My first time holding Callum

Most of the pictures are blurry because we had to keep our phones in a ziplock bag while in the NICU so the pictures were taken through the plastic.

Right after he was moved up to the “growers and feeders” floor of the NICU for less critical babies.

 

 

IUT #3


Baby boy is still doing great and handled his third IUT like a pro. My third IUT was a little bit more dramatic than the others but in the end everything was fine. We found out that I did develop a second antibody and it’s called anti-Kidd (jkb) antibody. This makes it more difficult to find blood for me since they now have to match donor blood with both of these antibodies. The blood bank worked all last weekend trying to find donor blood that matched mine and finally called Dr Trevett the night before the transfusion to tell him they got it! Well, the next morning I arrived at 5:30 am for the IUT and started getting ready for the procedure. Here I am with my GIANT belly at 32 weeks and 2 days:

img_2746

Dr Trevett came in with a really frustrated look on his face. He said after all that work to find the right blood, the courier had forgotten to drive it to the hospital so there was no blood for the baby. This meant that we would miss our 7:00 time slot in the operating room. The courier was doing his best to get the blood to the hospital so all we could do was wait. There is a 24 hour time limit for when you can safely use the donor blood after collecting it, so the clock was ticking. It was stressful to wait and not know if the blood would get there in time. The hours leading up to an IUT are difficult anyway because it is a somewhat dangerous procedure and I never know how it’s going to go. Since I had a bad experience with my very first IUT ever in Alabama, it is often hard to feel hopeful. I never felt Lucy move again after her IUT and the doctors would not scan her again for a week. Lots of fears go through my mind before every IUT. Is baby’s heart rate going to plummet when they stick the needle into the cord? Is he going to develop a blood clot? Will they have to do an emergency c-section in the middle of the procedure? Would they get him out in time? There are so many what-ifs so it was difficult to have added stress during that time. I got a sweet text from another mom who has been through several IUTS who I helped through her own kell pregnancy. She shared a verse with me and encouraged me. I knew many of you were praying for us and that gave me strength. We finally were told that the blood had arrived and we had an OR room booked for 12:00. The hours ticked by and finally a little after 12:00 Dr Trevett walked in looking super frustrated again (poor guy had a long day!) He said there had been two emergency crash c-sections and we now did not have an operating room available but the 24 hour window to use the donor blood was about to close. Our only safe option was to do the IUT in an ultrasound room, which would mean I couldn’t have the sedative/pain medication for the procedure since we weren’t in the OR. It also meant if baby went into distress they couldn’t deliver right there, they would have to move me up to a different floor to an operating room before getting the baby out. The other choice was to let the blood expire while we waited for an OR to open up, then the blood bank would have to search for more donor blood that matched my antibodies. It could take days to get the blood and in the meantime baby would be getting more and more anemic, which would obviously be very dangerous. I agreed with Dr Trevett that we just needed to go ahead with the procedure in the ultrasound room so baby could get the blood he needed.

I really struggled with my anxiety at that point but two verses came to mind that helped. The verse my friend had shared with me earlier that day:

Do not be anxious about anything but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6,7

And this simple verse that I love:

For He Himself is our peace. Ephesians 2:14

I made a conscious effort not to focus on the fear or the list of things that could go wrong and instead to find things I was thankful for. “Thank you Lord that I’m not in Houston trying to get an intrauterine blood transfusion in the middle of a disaster. Thank you for Dr Trevett and his patience, his kindness and his competence. Thank you for getting my son all the way to 32 weeks alive. Thank you for another chance to trust you in a difficult situation.” These small offerings of thanks brought me great comfort. I also thought of the other verse I mentioned, “He Himself is our peace. He is my peace. He’s bigger than the situation and the fear and the risks. He is my peace and He’s right here with me.” These thoughts calmed me, although they didn’t calm the contractions that started coming more frequently as I was moved into the ultrasound room for the procedure. The contractions kept coming throughout the procedure, which was really annoying and painful (having a long needle going through your uterus during a contraction is not something you want to feel.) Thankfully Dr Trevett and Dr Gomez, who was assisting, were very careful and patient working to get the blood into baby’s umbilical vein through all the contractions. Baby’s starting hematocrit was 24 and ending hematocrit was about 43. Baby handled the procedure well. Dr Trevett decided that he didn’t want to risk going in a second time to do the IPT (put extra blood into baby’s belly) since I was having regular contractions. I was thankful again for his caution and unwillingness to take extra risks when it isn’t absolutely necessary.

After the IUT, Dr Trevett wanted to monitor the baby and me for several hours and my contractions got closer together, although they weren’t changing my cervix at all or starting actual preterm labor. Dr Trevett had me stay overnight and they monitored baby’s heartbeat and my contractions all night long just to be safe. Since Josh had to work and couldn’t be there, my mom and Nora had come with me to Atlanta for the IUT. Nora brought so much joy to my hospital room while we passed the time on the monitor.

img_2755

Love pats for baby brother.

0d15d1b8-3dca-44c3-8701-36f6538f0d93

And here’s Nora laughing at nothing:

The baby looked good all night long and my contractions eventually subsided so we were discharged from the hospital in the morning. Since Dr Trevett didn’t do the IPT we can only wait about two weeks until the next IUT and we will probably have to deliver a week earlier than we hoped. The next (and last!) IUT will be Tuesday, September 12th when I am 34 weeks and 3 days. Then, depending on how that IUT goes we will deliver two or three weeks after that at 36/37 weeks. I cannot wait to meet my son!

I had my appointment with the MFMs at UAB Hospital this past week and to be honest, I left feeling very discouraged and depressed. I’m feeling a bit better now and I’m working on the blog post to share how it went with everybody so hopefully I can post that soon. We appreciate all of your prayers and encouragement. They mean more than you know!

Up Next Week: 3rd IUT and a Big Appointment

I had my 36th ultrasound yesterday to check on baby one last time before the IUT on Monday and to check his weight. The weight estimate is very important because the doctors use it to decide how much sedative/paralytic to give the baby before the procedure, and how much donor blood to give him during the transfusion. As usual, he’s measuring ahead (which we love!) and weighed 4lbs 10 oz at 31 weeks 6 days. I think that is about the average weight of a 34 week baby. The bigger he is, the easier the transfusion is for Dr. Trevett and the better off baby will be when he is delivered early. There were no signs of hydrops or distress during the ultrasound but baby was definitely the stillest he’s ever been and his MoMs ranged from 1.5-1.72 so that made me anxious. They drew my blood for the normal pre-IUT blood work and then I was on my way home to Alabama, just barely missing Atlanta rush hour traffic. About and hour later I got a call from the hospital. They told me I needed to turn around and come back because they had just received my blood results and there was a problem. It looked like I had developed another antibody, possibly the Le(a) antibody, which I know absolutely nothing about. They needed to draw more blood and do more tests to clarify what was going on. So, I turned back around, drove back to the hospital and had my blood drawn again. I won’t know more about this until Monday but I’m hoping that I didn’t really develop another antibody. The reason they do blood work before every IUT is because they have to check to make sure I haven’t developed any new antibodies. They have to carefully match the donor blood to my blood before every IUT because if they accidentally gave the baby blood that doesn’t match my antibodies, my body could destroy the baby’s blood right after they give it to him. Anyway, it was a long day and I’m thankful to be home with a day to relax with my family. Well, you know, do dishes, cook meals, do four loads of laundry, pack for Atlanta, clean the house, diffuse one thousand toddler melt downs and all of the other things a “relaxing” day with three young children entails. Tomorrow, my mom, Nora and I will drive back to Atlanta and stay through Tuesday for the IUT. Please pray that the baby is safe until then and that the procedure goes well. It’s stressful to feel his kicks slow down as he gets more anemic every day leading up to the IUT. Here’s our sweet boy during yesterday’s ultrasound-

img_2710

I also would love for you to pray for a very important appointment I have coming up next week. The appointment actually doesn’t involve my current pregnancy. It is about Lucy. I’ve been wanting to make this appointment for about four years now and I finally worked up the courage a few weeks ago to schedule it. The date has crept up on me and now it’s just a few days away, August 30th. Even though I’ve been wanting and needing to have this appointment since Lucy died, I’ve also been dreading it.

The appointment is at UAB Hospital (in Birmingham) with the head of the MFM department to discuss everything that happened with Lucy. We will also go over all of the test results that I never saw like her autopsy, my placenta analysis, amnio results, etc. I have a lot of questions that I’ve never been able to ask since I never had this appointment after Lucy died. Usually, after a baby is stillborn the doctors set up a “preconception appointment” for several weeks later to discuss what happened with the baby and to go over any test results and questions the parents might have. They also discuss future pregnancies and what the treatment or monitoring would look like if the parents did want to try for another baby (thankfully we won’t be discussing that.) I had scheduled my preconception appointment at UAB after Lucy died, but one of the main MFMs called me about a month after we lost her and told me I could cancel the appointment. He said he had seen my placenta analysis report and decided that I had had a fetal maternal hemorrhage which caused Lucy’s death (other doctors disagree.) He thought we could go on to have another baby naturally so he decided there was no need to have my preconception appointment. I was so overjoyed by this news that I cancelled my preconception appointment, which I now know was a really bad decision. I never got to ask the MFMs about the treatment and lack of monitoring I received during my pregnancy with Lucy (that contributed to her death.) I never saw her autopsy results, or any of the test results or anything. As far as I know, no one was held accountable for what happened or was even notified that a baby had slipped through the cracks left gaping by their hospital’s outdated protocols. I never got to ask them why they “don’t change protocol just because of one baby.” I am curious to know how many babies need to die before they decide that their protocols might need to be updated. Now I just sound bitter, which is not what I want. I hope to get some answers, to better understand the decisions the doctors made, to forgive the mistakes that were made and to make sure that this doesn’t happen to any other babies in Alabama.

Preparing for this appointment and writing down my questions has been emotionally difficult to say the least, but I feel like I have to have this appointment to get a little bit of closure regarding my experience at UAB. I am dreading the thought of going over her autopsy, thinking about my precious baby being cut open. How can a mother bear those thoughts? But the weight and responsibility of protecting other babies whose mothers go to UAB for treatment weighs heavily on me. Nora and this baby boy on the way are my daily reminders of how Lucy’s story could have played out if only she had received the right treatment and monitoring. Please pray that God gives me the strength to get through this appointment and find some peace afterwards. Also pray that the MFM department is humble enough to learn from Lucy and that they change their protocols regarding management of isoimmunized pregnancies.

Two Down, Two To Go

Our baby boy just had his second IUT this week in Atlanta and we are so thankful that everything went smoothly. With this IUT Dr Trevett made sure to give me an IV sedative and pain killer before the IUT, which really helped calm my nerves and dull the pain of the needles during the procedure. I was still clear headed enough to understand what was going on though, so I liked that. Once again, baby boy was in a bad position for the IUT so Dr Trevett had to stick him in the thigh to paralyze and sedate him before doing the transfusion. His beginning hematocrit was about 26 and ending hematocrit was 43. This time baby didn’t have any weird heart arrhythmias and he seemed calmer during the IUT. After putting the blood into baby’s umbilical vein Dr Trevett went in a second time to do an IPT (put reserve blood into baby’s belly.) Unfortunately, the baby was lying on his side and there was only a tiny space where Dr Trevett could insert the needle without puncturing his liver or kidney, so he decided not to even try it. It wasn’t worth the risk (and I’m glad he didn’t try it.) Since the baby doesn’t have any reserve blood in his belly to absorb over the next couple of weeks, we will have to do the next IUT in two weeks instead of three weeks like we had hoped. So, our next transfusion will be on Monday, August 28th when I’m a little over 32 weeks pregnant. Hopefully the IPT will work next time so that we can go three weeks and then have the last IUT at 35 weeks and deliver at 37-38 weeks. That would be a dream come true! 

The same day I had the IUT I also had my port removed (which made for a really long day!) and I now have no port/permacath for the first time in five months. I feel so free! It’s also wonderful not to have the weekly eight hour IVIG infusions. 

Thank you all for praying for us and following our story. I haven’t been able to blog as much as I would like because our computer recently died (it was the first time we bought a computer that wasn’t a MAC and we have learned our lesson.) We can’t afford a new computer at the moment so I’m writing this post on my phone. I will try my best to update everyone as we get closer and closer to meeting our son. 

First IUT a Success

Our first IUT was successful and baby handled it well. He is squirming and kicking much more now than he was before the transfusion so he must be feeling a lot better. Dr. Trevett did an MCA scan right before the transfusion just to see what baby’s numbers were and his MoM was 1.5 but we are guessing it was actually higher than that. Since I had had two rounds of steroid shots to develop baby’s lungs, and steroids can artificially lower MCA scans, we think it was over 1.5 by that point. Dr. Trevett had planned to go through the placenta and into the umbilical cord with the needle and put a paralytic and sedative into the cord to keep baby still during the procedure but had to change plans at the last minute. The back of baby’s neck was pressed up against the umbilical cord insertion and Dr. Trevett didn’t want to risk going near his neck with a needle before he was paralyzed so he stuck baby in the thigh with the needle to paralyze and sedate him. Baby did not seem to like that one bit and his heart rate started acting up after that. He started having some arrhythmia and his heart rate seemed kind of slow. Dr. Trevett said he was having PACs (premature atrial contractions) which are usually harmless, but it definitely scared me at the time. They then went into baby’s umbilical cord with the needle and drew some of his blood. My husband, Josh, was allowed to be in the operating room for the first time ever to watch the procedure and be there to support me and he said he was shocked by how much blood they drew. He was equally surprised when he saw how much blood they put into baby! He said he was expecting them to give just a tiny amount of blood since baby is still so small (at least compared to a grown person) but he said they hung a normal looking bag of blood on an IV pole and started slowly transfusing it into my belly (and into baby) 10ccs at a time. Baby’s beginning hematocrit was 28.6 and his ending hematocrit was 40, which we were very happy with. Dr. Trevett decided not to do the IPT (putting extra blood into baby’s belly) since his beginning hematocrit wasn’t too low. I am glad that he didn’t now because of baby’s weird heart rhythm.

Out of all the IUTs I’ve had (this was my seventh) this one was definitely the most painful. Apparently they don’t really sedate women for the procedure at this hospital so that came as a surprise. They did give me a little pill to take orally before the procedure (Ativan, I think) but it had absolutely no effect on me and I felt completely awake and wired during the procedure, which wasn’t helpful for my nerves or for the pain of the needles going through my uterus and placenta. Dr. Trevett said he will definitely use a sedative for me during the next IUT so hopefully that will be a better experience.

After the IUT was finished Dr. Trevett kept me and baby on the monitor for six hours to make sure he was ok. His heart continued to have the weird offbeat PACs, which was unnerving. Eventually his paralytic wore off and he started moving around a lot so that was reassuring. I had contractions every 10-30 minutes but they never got closer than that so no one was worried. The contractions have continued since the IUT. The same thing happened with Nora and I was diagnosed with an “irritable uterus.” That basically just means that I got to have regular, real contractions that didn’t induce labor or make labor progress. With Nora it got worse after each IUT so I’m expecting the same thing to happen with this baby. Anyway, I was released to go back to the hotel after that and the next day Dr. Trevett did an ultrasound to check on baby. It’s always a good idea to do an ultrasound 24 hours after an IUT since the first 24 hours after the procedure are the most critical. If anything is going to go wrong it will be within 24 hours of the IUT. His MoM was down to 1.03 and his arrhythmia had completely cleared up. It was so good to hear his heartbeat sounding normal again. Dr. Trevett will do baby’s second IUT on Monday, Aug 14th, 12 days after his first IUT.

Now that IUTs have started I have stopped doing the weekly IVIG infusions and will have my port removed next week since it isn’t needed anymore. I’m really excited to get the port removed and stop IVIG! I already feel less nauseated (finally went a whole day without taking Zofran!) and have a little more muscle strength than before. Thank you all so much for praying for us and encouraging us. I had so much peace through everything that happened this past week and I know that would have been impossible without God and without your prayers. Please continue to pray for our boy. He has a lot of hurdles to get past to make it here alive and healthy. Here is a picture of him at his check up after the IUT. He was rolling over so the picture isn’t good but you can see his cute, chubby fists, ready to fight!

img_2421

ULTRASOUND #31