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We brought our beautiful healthy boy home from the NICU a few days ago and it has been an amazing, exhausting whirlwind ever since. Callum’s doctor did a couple more x-rays and lots of blood work after his bloody diaper and all of it came back clear so she was able to rule out the transfusion related gut injury/NEC that we had feared. He has a dairy allergy instead so I’ve cut out all dairy from my diet and he’s on a dairy free formula (with occasional breastfeeding) until all of the dairy is out of my system (it usually takes a few weeks.) Then we will transition back to breastfeeding only. After Cal had his second post birth blood transfusion his oxygen was so much better (no more desats) and he basically took all of his feedings by mouth from that point on. It felt unreal when they told me I could take him home. I showed up at the NICU to get him and his tiny little body was completely wire free for the first time since he was born!

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The hospital has a rule that all babies being discharged from the NICU must be wheeled out of the hospital in their mother’s arms, which felt kind of ridiculous since I had been walking back and forth from the Ronald McDonald House to the hospital parking deck to the NICU and back for weeks. It felt so surreal and wonderful though, to be leaving the hospital with my healthy baby boy in my arms.

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We are overcome with gratitude to God for giving us this miracle and completing our family. Callum was His idea in the first place…a redemptive gift that I do not deserve. I get teary when I think back to the beginning of this year when Josh and I were trying to decide if we were brave enough to try for one last baby and God whispered, “Let me bless you.” over and over again. He encouraged us to be courageous and to trust Him. He had this sweet baby boy in mind and I’m so glad we took that leap. All of the fear and the physical pain and exhaustion and inconvenience was so, so worth it. Watching Nora meet her baby brother for the first time was one of the happiest, most beautiful moments of my life. We grieve the loss of her big sister daily. We ache for the friendship that was lost for Nora when Lucy died. She should have a sister two years older than her. It has been so sad to watch Nora play on the sidelines while her brothers play together every day in their own world that she isn’t really a part of. Josh and I prayed so many times for God to give Nora a sibling friend of her own and now he is here! Callum and Nora are almost exactly the same age distance apart as Liam and Asher and Lucy and Nora. Thank you, Lord, for hearing our pleas and for giving Nora her very own sibling friend.

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Seeing the relief on Liam and Asher’s faces when they are with Callum is so incredibly gratifying.

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I’m pretty sure Callum has a different take on things since he is constantly passed around, kissed, patted, hugged and manhandled by his older siblings. I think he longs for his peaceful NICU days of the past.

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Callum had his first follow up appointment with his pediatric hematologist in Birmingham a couple of days ago and it went really well. He literally slept through his blood draw and his numbers looked ok. His hematocrit was 30 and hemoglobin was 10 and retic had gone up to 1. I really liked his hematologist too. I think Cal will need at least one more blood transfusion before his body is making enough blood on its own, but maybe not. He will have weekly blood draws at the hematologist until he is cleared of his HDN. Thank you all for your support and prayers along the way. We don’t know how we could have done it without you all.

 

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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.

 

 

Nora Turns Two and Baby Brother Keeps Fighting

On July 19th our beautiful Nora Juliet turned two years old! Her birthday will always feel miraculous and holy because it is the day God fulfilled so many promises He made to me when I was at my most broken place. It was the day that I did the “impossible”….I gave birth to a healthy, full term kell positive baby girl. God used her to bring light back into our darkness, to heal gaping wounds, to restore hope, to empower women all over the world not to give up. Nora will always be our reminder that God is indeed good, and He does love us. She is our reminder that God places our deepest desires in our hearts for a reason and we do ourselves an injustice if we ignore them, especially when He is calling us to step out in trust. I know that He has great plans for Nora’s life. Thank you, God, for giving me this daughter I can keep. We love her so much and have loved watching her develop and grow over the past two years. We praise you, for you have done gloriously.

Isaiah 12:5 Sing praises to the Lord, for He has done gloriously; let this be made known in all the earth.

Now, a little bit about Nora (because I still marvel that we get to know her on earth and see her personality develop!) Nora is the darkest of our kids- dark brown eyes, darker skin tone and darker hair. As her hair grows longer and longer it gets curlier and curlier and she now has ringlet curls all over her head. She is super maternal and bossy and sweet. She will boss her brothers, her cousins, adults and animals, and I’m sure her baby brother will get it when he arrives too. She wants to take care of everybody. She is independent and loves to drink out of a normal cup, eat with utensils (ALWAYS) and help me unload the dishwasher. She speaks in full sentences and has an amazing vocabulary. At age two her brothers knew all of their letters and numbers but she only knows A, O, S and X. She’s much more interested in relationships than things like numbers or letters. Nora talks and sings constantly and makes up songs about things she’s thinking about or doing. Her favorite place to be is anywhere with people, especially friends and extended family. I think her favorite person on earth is “Manga” (how she says Grandmama) and they have a very sweet, special bond. I sometimes think this is because “Manga” was the one who came to Houston with me and lived in the Ronald McDonald House with us for months. Nora heard Manga’s voice in utero as much as she heard mine and so I think a special bond was formed. Often, Nora wants to go to Manga instead of me when she has he chance. Nora is our daily delight, making us laugh every few minutes. Seeing her with her Daddy is still one of my greatest joys because I ached for so long to see Josh with his own daughter in his arms. Her brothers adore her and I enjoy having a daughter so much. Thank you, God, for this gift.

Nora with her Manga

First train ride

First trip to the beach

Nora at 22 months, me at 22 weeks pregnant.

Exploring Hurricane Creek

Giving Daddy pats

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Baby boy is still doing well but his anemia continues to worsen gradually. His MCA scan this week (27w 2d) was the highest it’s been, at 1.39. Dr. Trevett really thinks next week will be the week that baby needs his first IUT but I’m not so sure. We tentatively scheduled the IUT for Monday but will rescan this Thursday (tomorrow) to see how baby looks. If he’s getting close to the 1.5 cutoff we will plan to have the IUT on Monday. But if baby’s numbers look about the same we will cancel Monday’s IUT. We still can’t believe we’ve made it this far without a transfusion! Baby looked great on ultrasound and is estimated to weigh 2 lbs 11 oz. Here are a few pictures of him from the past couple of weeks:


And here I am at 27 weeks, 4 days pregnant.

We are still struggling to come up with a name for this miracle boy of ours. Most of the names we like are pretty weird (Liam, Asher, Lucy and Nora were all the most “normal” names on our list at the time.) There are a lot of names that we kind of like, but none that we love. Hopefully we will come up with the perfect name soon. We just started getting things ready at home for our boy since we are feeling more confident that we will actually get to bring him home alive. We live in a small, three bedroom house so it is going to be a tight squeeze but we couldn’t be happier to have to fit our FOUR kids into our cozy little house. I never thought we would be able to have four living children! I will do my best to update the blog after my ultrasound (and four hour drive home) tomorrow. Please pray that baby’s numbers aren’t any higher and he gets another week without a transfusion.

Slightly Anemic

I’m now 25 weeks and 3 days pregnant and the baby is still doing well (poor little guy still doesn’t have a name though!) We are so very grateful to have made it this far without needing an IUT. My next appointment is on Monday when I’m 26 weeks and 2 days. At 26 weeks Nora was having her second intrauterine blood transfusion. Here are baby boy’s MCA scan numbers over the past few weeks:

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You can see that his numbers have gradually increased over the weeks but he is still staying well under the 1.5 cutoff. Right now he is probably slightly anemic but there are no other signs of trouble on his ultrasounds. His heart looks beautiful. Actually, all of his organs look beautiful (such a blessing) and there is no extra fluid anywhere. He is measuring about two weeks ahead and weighs almost 2 pounds. We are thrilled to see our boy do so well and we give God all the praise for this miracle.

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In the past couple of weeks we have finally started explaining to Nora that there is a baby brother in Mommy’s belly and that one day he will come home to stay. This is a huge leap of faith for me because we don’t actually know if he will come home or go to heaven, but lately we’ve been feeling more hopeful than ever that he will survive, so we let the secret out. I’m also HUGE and Nora was starting to wonder what was going on with Mommy’s weird body. I just remember so vividly trying to explain to 2 year old Asher that baby Lucy wasn’t going to come home like we had said and that she had gone to heaven instead. It was terrible and it was so hard for him to wrap his little mind around the concept. I wanted to protect Nora from feeling that loss if her baby brother died so I waited much longer to tell her about the pregnancy than the boys (they knew as soon as I came home with a permacath sticking out of my chest at 10 weeks.) Nora is SO excited about her baby brother and talks about all the things she wants to do with him. In fact, we sat on my bed two nights ago, just Nora and me, having a real heart to heart conversation for the first time. We talked all about the baby and the fun things she would get to do with him once he gets here. It was so special because I felt this sweet connection to my daughter, like we were friends, and it’s something I’ve been looking forward to ever since I found out that I would have a daughter I could keep. Anyway, Nora told me she was going to rock her baby brother, sing to him (she sang me the song she made up for him), put his socks and hat on him, give him milk, give him a bath and when he falls asleep she will shout, “Wake up beebee!” so he can be awake with her (we’ll have to work on that last part.) She also said we should name him “Beebee Callum.” Goodness, she has a lot of ideas and plans for a baby she hasn’t even met yet. With each adorable proclamation of hers my heart trembled and I prayed, “Oh Lord, let it be. Let her hold him and sing her special song to him and even wake him up when hes’ napping, I don’t mind. Please let us experience life with our boy.”

Please continue to pray for our son, that God would strengthen him in this fight for life and protect him from harm. Please pray that Nora will get to be a big sister and meet her baby brother alive one day this fall. I will try to do a better job of updating the blog more frequently. Usually, no news is good news, though!

Ultrasound #13

Yesterday I had my 13th ultrasound and it wasn’t as great as the previous 12 have been, unfortunately. I was 18 weeks and 2 days yesterday and it looks like my antibodies are starting to affect baby. His MoM levels were around 1.3 yesterday and all of his previous scans have been less than 1.1 so there definitely was a jump this past week. Dr. Trevett also noticed that baby’s bowels looked slightly echogenic on the ultrasound. This means the bowels/intestines looked brighter on ultrasound than usual which can be normal or can be a sign of fetal anemia. Dr. Trevett felt uneasy with the jump in baby’s numbers and the possible echogenic bowels so he wanted me to go be seen by Dr. Moise in Houston this Thursday. We were kind of scrambling at that point to get the appointment set up and trying to get things set up at the Ronald McDonald House in Houston as fast as possible (we can’t afford to stay in a hotel but it takes a while to get in at the RMH.) I wasn’t TOO nervous because the baby really did look great otherwise on the ultrasound. He was very active and there were no signs of hydrops. His heart looked perfect and heart function was good. My amniotic fluid levels are still normal as well. Nora’s MoM at 18 weeks was 1.48 so I still feel pretty good that this baby is at 1.3. It WAS a pretty big jump in just a week so I do feel more nervous now.

Anyway, as we were making all of the arrangements to go to Houston and I was trying to wrap my mind around the situation, Dr. Moise called me and asked how baby looked on ultrasound and I told him about the echogenic bowels, the MoM levels, etc. and he thought that I probably didn’t need to come all the way to Houston yet. He said he has never seen a baby with (accurate) MoMs less than 1.5 who was actually anemic. He also discussed everything with Dr. Trevett and the new plan is to have another ultrasound with Dr. Trevett this Thursday in Atlanta and if the baby is worse, I will go to Houston. Dr. Moise also reminded me that it is normal for MoMs to go up one week and down the next week. The thing that is concerning is when there is a consistent upward trend, but even then baby is safe until the MoM reaches 1.5. Dr. Moise does want me to redo the three rounds of plasmapheresis (treatments I had earlier in the pregnancy to remove antibodies from my blood) and then have two back to back rounds of IVIG. Since the plasmapheresis got my titer from 512 down to 64 last time he is hoping it will work well again to lower my titer and buy baby some more time before he needs a blood transfusion in utero. At the moment my titer is 512.

I am on board with this plan but I am really hoping that I don’t have to have the permacath surgically placed again. The specialist is wanting to place another permacath in order to do the plasmapheresis treatments but I’m trying to see if we can do them using my port and an IV instead (they have to have two lines of access during plasmapheresis.) The permacath is this big thing they sew into my chest that runs through my jugular right down to the opening of my heart.

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The doctors have to use x-ray guidance during the procedure to insert the permacath which could expose the baby to x-ray radiation. It’s also painful, uncomfortable and I can’t take a shower or swim with it in. It increases my risk for infection and blood clots also. I would hate to have the permacath placed just for three rounds of plasmapheresis. This is the port I have in now. It’s under the skin and much more comfortable and I can get it wet.

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Please pray that I can avoid the permacath somehow and that the ultrasound this Thursday shows a healthy baby and no signs of anemia. My side effects from the weekly IVIG infusions have finally started easing up a little so thank you to everyone who has prayed for us regarding that. It is so wonderful not to deal with daily migraines and the nausea is even starting to lessen which is a HUGE blessing. I’ll update as soon as I can after the ultrasound on Thursday!

Baby Update- 17 Weeks

Another good update, thank you Lord! Our baby’s weekly scans are still looking perfect and he is thriving so far. We thought we would be moving MCA scans from once a week to twice per week, but he keeps looking so good on ultrasound, and his numbers are showing no anemia, so we are still able to scan only once per week. I am amazed at how well baby boy is doing! He is even doing better than Nora was at this gestation, which is a miracle. Here is a side by side look at all of my kell babies’ MCA numbers. Remember, once the number gets over 1.5 the doctors know baby is anemic and baby either needs an intrauterine blood transfusion or delivery.

14 Weeks:  Lucy—  Nora—  Baby Boy 1.03

15 Weeks: Lucy—  Nora 1.3-1.48  Baby Boy 1.06

16 Weeks: Lucy—  Nora 1.16-1.34 Baby Boy 1.07

17 Weeks: Lucy 2.5 Nora 1.2-1.3  Baby Boy 1.03

18 Weeks: Lucy 2.7 Nora 1.48  Baby Boy–1.3

Every week that passes means baby’s survival rate goes up just a little bit. Only a few more weeks to viability and I can breathe a little bit easier. Last week at 16 weeks baby was measured for the first time and he weighed about 6 ounces, which is a good size for a baby at that gestation. I had my titer checked last week to see if my antibody level had gone back up. It started at 512 (8 and above is considered critical) and after my last plasmapheresis treatment it was all the way down to 64! But yesterday I found out that it is back up to 512, which was kind of discouraging but not surprising. The same thing happened during my pregnancy with Nora, although it never got nearly as low as 64 after the plasmapheresis. Thankfully, even though my titer bounced back up to 1,024 with Nora, the weekly IVIG infusions still worked and kept Nora safe from my antibodies until about 24 weeks. So, even though my titer is high again, it doesn’t mean the IVIG isn’t working. It is obviously working because our baby isn’t anemic yet. He is always very active on ultrasound. I was really concerned when I didn’t feel him moving at 15 weeks like I did with my other four. We discovered that I have an anterior placenta which means the placenta is covering the front of my uterus and is acting like a cushion when baby kicks. They told me that I probably won’t feel him move for a long time. Thankfully, as I type this I can feel him kicking and squirming so that is comforting and exciting. Because I have an anterior placenta, the doctor will have to go through my placenta with the needle when we do IUTs.

Feeling the baby move and seeing him on ultrasound are proving to be very important bonding moments for me. After a woman loses a baby and is pregnant again, she usually struggles to be hopeful and expectant like most pregnant women are. I am often shocked when I see women announcing their pregnancies with wording such as “New baby arriving October 2017” because they just expect that their pregnancy will end with a living baby. Such confidence and hope! I couldn’t conjure it up, no matter how hard I tried. There is an innate sense of “self-protection” that kicks in after losing a baby. It’s primal and impossible to ignore, just like the love we have for our children. Yes, I will first pack this baby’s diaper bag for a stillbirth with blankets and tiny hats. I somehow feel safer if I prepare for every possible scenario in some small way. Then I will hopefully repack it with micro preemie clothes and items for a long NICU stay. Then, hopefully assuming we get past that point, I will finally pack his diaper bag in preparation for a living, full term baby with diapers and pacifiers and cute outfits, just like I did for Nora.

If a baby loss mom also has a high risk pregnancy, that only adds to the fear and anxiety. With Nora and this baby, when I saw the two pink lines on my pregnancy test I didn’t think, “OH, I’m having a baby!” I was filled with fear and awe and adrenaline, wondering whether this would end in another life altering tragedy or a breathing, living baby in my arms. I wasn’t REALLY able to savor my pregnancy with Nora or celebrate my second daughter until she was in my arms, alive, and then it all rushed on me at once, flooding me with the most delicious feeling of relief I’ve ever felt. Nine months of restrained hope suddenly released and poured out until my heart overflowed. And to this day it still overflows with awe and thankfulness and relief that she is here. Now I am in that waiting period yet again, wondering whether our family is heading toward some terrible precipice that will tear us and mangle us permanently, or if we are headed toward another of God’s miracles waiting for us like the best present under the tree in December. The waxing and waning of fear, peace, anxiety and hope are part of our everyday lives. But when I feel his little nudges and kicks and when I see him on the ultrasound rubbing his eyes with his tiny fists, practicing his breathing in and out, crossing his legs, waving and yawning, I feel that love and adoration wash over me. The pure strength of a mother’s love pushes all of that fear into the background. I feel connected to him and dedicated to him and HOPEFUL about meeting him here on earth. Thank you for praying for our boy. Hopefully he will continue to fight and conquer these antibodies week after week until he is safely in my arms.

Here are a few ultrasound pictures from his 17 week ultrasound yesterday:

Definitely a boy!