Last IUT!

Nora’s last IUT was a success! Thank you all for praying for us. Dr. Moise proved once again that he really is the expert when it comes to these types of pregnancies. He knew Nora could make it four weeks between transfusions and wasn’t concerned that her MCA scan was very high (2) yesterday. I was doubtful and kind of nervous but he was right. Nora’s hematocrit was 35 (not very anemic at all!) today and after the transfusion it was 44. Dr. Moise thinks she can definitely make it to 38 weeks!

Right when I was getting prepped on the operating table Nora started moving like CRAZY. It looked like I had an alien trying to get out of my belly. They had to give her an extra dose of the paralytic medication to get her still enough for the transfusion. After the procedure it took her a much longer time than usual to start moving again. It was quite scary, actually, because I was watching her heart monitor and her heart rate was basically staying the same and not fluctuating at all. A healthy baby should show a heart rate that goes up and down but Nora’s just stayed steady. I didn’t feel her move for a long time.

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You can see the top line, which is her heart rate, and how it’s not varying much at all.

Nora FINALLY perked up and started moving again and her heart rate had some healthy fluctuations.

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We were (and still are) flooded with relief that Nora made it through her last IUT safely. Not only did she make it through her last one but she made it through all FIVE intrauterine blood transfusions. Thank you, Lord, for keeping her alive. Here’s Nora’s cute profile from her ultrasound right before the IUT:

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Look at those gigantic lips!

And here I am after the IUT, flooded with joy and relief:

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God has answered so many of our prayers with a “YES!” and He has done a miracle in my body, just like I asked Him to do last October. Thank you, Lord, for these gifts.

Psalm 10:17 Oh Lord, you hear the desire of the afflicted; you will strengthen their heart; you will incline your ear.

Psalm 9:1 I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds.

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35 Weeks

We drove to Houston for the LAST time on Sunday. It’s so nice to have my whole family together for this trip. Josh has the whole month of July off work so he can stay here with us the entire time (unless Nora’s NICU stay is longer than we expect.) On the way here it was so exciting to imagine our ride home with tiny Nora in her carseat. It was really weird to pack for this trip because we will have an extra person on the way home. Packing for a month long trip out of town is hard, but packing for a new person and for the whole birth and NICU stay on top of everything was overwhelming. It’s also hard for me to wrap my mind around the fact that we will ACTUALLY have a live baby in our family soon. I have subconsciously not allowed myself to picture our life with Nora in it, probably as a “safety mechanism” to try to protect myself in case the disaster happens. I will be completely shocked when she arrives, I just can’t even picture it. I now realize that I forgot to pack some very important things like a pack and play for Nora to sleep in after she’s born. I can’t believe we are so close to bringing home our baby girl!

Today I had my 35 week check up and pre-op appointment. Nora had an MCA scan to check for anemia and her MoM was 2, which is very high. 1.5 is considered anemic and a 2 is very anemic. Thankfully there were no signs of fetal hydrops and Dr. Moise said the MCA scans are not very reliable anyway at this point. She weighed six and a half pounds today and looked good on the ultrasound. Her last intrauterine blood transfusion is tomorrow at 1:00. Please pray that she makes it through the IUT safely. I am so glad this is the last time I have to do this! The plan is to go three more weeks after this transfusion and then I’ll be induced at 38 weeks. Dr. Moise is hoping Nora will only have to be in the NICU for a few days after she’s born. We will be allowed to take her back to Alabama after she is discharged from the NICU as long as she has an appointment set up with a pediatric hematologist in Birmingham. Dr. Moise has already spoken on the phone with her hematologist at UAB in Birmingham and sent him all the information he needs to treat Nora after we return. Now we just need to get through this last transfusion and get her here safely in three weeks. Thank you all for your continued support and prayers. I’ll update as soon as I can after her transfusion tomorrow.

33/34 Week Update and a Delayed Transfusion

Today I am 34 weeks and 2 days pregnant. Last week Nora looked happy and healthy on her weekly biophysical profile ultrasound and non-stress test. The technician didn’t  measure Nora but the doctor measured my belly and it was the size of a 36 week belly instead of 33 weeks. Here are a few pictures of me at 33 weeks. My sister could NOT stop laughing when she was trying to take these pictures because she said it looked like I was wearing a prosthetic belly. There was a group of other moms nearby watching and laughing with (at?) us too. I love having a gigantic baby belly, especially since I know I only have to go to 38 weeks and not 41 weeks like I did with Liam and Asher.

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And how I really feel most of the time:

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Originally we thought Nora’s fifth and last blood transfusion would be today but Dr. Moise pushed it back an extra week. He’s traveling internationally this week and he really likes to do the last IUT at 35 weeks, so my next transfusion will be a week from today. I am kind of nervous about going four weeks between transfusions but once again I just have to trust that Dr. Moise would not do anything if he thought it would put Nora in danger.

Today I had my 34 week check up and Nora passed her biophysical profile and non-stress test with no problems.

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Thankfully her growth has slowed down some and she’s now in the 88th percentile at 6lbs 2oz. I actually lost a little weight this week which worried me some but didn’t concern the doctors. There was no extra fluid present in Nora’s body (which is good) but my amniotic fluid was measuring at 24 which is on the high side. Again, the doctor wasn’t worried about it and said Nora looked very active and healthy. Here I am at 34 weeks:

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Since Nora’s transfusion was moved back we have been able to stay in Alabama for an extra week. I’ve been able to do some fun “normal” summer activities with the boys like swimming and playing in the sprinkler and drinking root beer floats on the porch. It’s so nice just to be at HOME, all together. We’ve been able to see our extended family this past week which has been so wonderful. My sister in law repainted her childhood rocking chair for Nora and it is so cute!

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Thanks to my mother in law, we were able to get our house decluttered, organized and somewhat ready for a new baby. It has been such a great, productive visit home and now we are just ready to meet our little girl. Please pray that Nora makes it to her next transfusion without getting too anemic. We can’t wait to meet her in just a few short weeks!

Provision

A few weeks ago Liam asked me what his baby sister’s name was. I spelled it out for him “N-O-R-A, can you remember what that spells?” And he said, with frustration in his voice, “No, Mom, not Nora, my other baby sister.” My heart dropped and I said, “Lucy, remember? She’s in heaven.” And he said, again, with frustration, “NO, my OTHER baby sister.” It took me a minute to figure out who he was talking about. “Her name was Scarlet.” “Yeah, Scarlet! I really miss Scarlet. Why couldn’t we keep her?” It was a difficult and sad conversation that didn’t really clear things up for him. He said, “Why couldn’t we keep all three baby sisters? I wanted all of them.” He even cried himself to sleep that night thinking about his missing baby sisters. Today he asked me if Scarlet was in heaven and I said no. He wanted to know why Lucy was in heaven but Scarlet wasn’t. He asked again why we couldn’t have all three baby sisters. I wanted them all too, including Jude and Pax. Our hearts still mourn for our missing babies. Liam’s words brought me back to last year. I told the boys that when the leaves on the trees turned scarlet, our baby Scarlet would be here. Liam and Asher watched those trees religiously and when the first scarlet leaves came, they got SO excited, dancing around, waving their scarlet leaves in the air.

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I remember June of last year when we were getting everything ready for our baby Scarlet and counting down the weeks until she arrived. I was starting the process to induce lactation to breastfeed Scarlet (a long, intense and expensive venture.) We started collecting baby girl clothes and we got out all of Lucy’s outfits that were never used. We bought a glider, a brand new crib and bassinet, and other furniture items for her room. I painted things pink, white and grey for our coming girl. We bought a van since we would need a bigger vehicle for three carseats. We even bought a house last October so that we would have more space for our family of five. There was so much preparation and so much money spent on “Scarlet.” I could not believe it when we had to pack up her entire pink, grey and white nursery and put it in storage. All of those adorable baby girl outfits freshly washed and hung in the closet had to be packed away in boxes and stored in the shed. I felt silly driving a big van around with only two kids and a completely empty back seat. The hours and hours of pumping milk, the hundreds of dollars spent on medications and herbal supplements to bring in the milk and even the nursing bras and tank tops seemed wasted. I felt so stupid (after we learned about Kailee and Peter’s betrayal) when I had to continue pumping to wean down my milk supply. (You can’t just suddenly stop pumping once your milk supply is established or you could get engorged.) I remember holding a freezer bag full of breast milk and fighting the urge to pour it all down the drain. It was too valuable to waste but there was no baby to feed. I wrote the date on the bag and put it in the freezer dutifully, for whom, I had no idea.

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There was so much preparation last year for our “rainbow baby.” When Scarlet never joined our family I wept at the thought of all that was wasted. It felt like even our hope had been a waste. But all that hope and preparation was not wasted. God has been showing me over the past few months that He was using last year to prepare us for our REAL rainbow baby, Nora. He looked ahead at our future and He knew that I would be in Houston for the majority of my pregnancy and none of us would have time to prepare for Nora. He knew I wouldn’t be home to paint the nursery, to gather the furniture or baby girl clothes. He knew we wouldn’t have time to buy a van or move into a new house while our family was split up and I was fighting for Nora’s life in Houston. To get Nora’s nursery ready we basically just had to move everything out of the shed and into her room (besides some fun little projects.) And all that money, time and energy spent on pumping breast milk for Scarlet? Not wasted! Since breast milk is good up to a year after being frozen (in a deep freezer) we can give all the milk to Nora. While she is in the NICU I won’t have to worry about how long it takes my milk to come in or try to keep up pumping enough until my supply is established. We will have bags and bags of her Mommy’s breast milk ready and waiting for her when she arrives. What a huge blessing!

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As I’ve said before, we have had to spend all of our extra money this year on medical bills, and gas and living expenses while in Texas. We have barely had enough money to pay for everything. If we had to buy all the things needed for a new baby, it would have been impossible. Wasn’t it kind of God to help us store up everything we needed ahead of time so that we don’t have to worry about any of it now? We have also been so blessed by the money donated through the T-shirt fund raiser that was organized by two sweet ladies who I barely know. They said that they felt like God wanted them to organize it and they just wanted to help. I am amazed by their kindness (thank you Michelle and Joy!) and by everyone else’s generosity. The way God has provided for us this year has been incredible.

Psalm 68:10 In your goodness, O God, you provided for the needy.

Romans 8:28 And we know that for those who love God all things work together for good, for those who are called according to His purpose.

I am reminded yet again that when things seem bleakest God is often working behind the scenes for our good, to provide exactly what we need even if we don’t understand or appreciate it at the time. Thank you, Lord, for your provision.

32 Week Update

Today I am 32 weeks and 6 days pregnant with our lovely Nora. I guess this is almost a 33 week update. My belly is getting so big people in public often ask if I’m having twins or if I’m due “any day now.” I love being pregnant. I’m thankful for all of the baby kicks and squirms that I feel throughout the day. I’m thankful for the stretched belly and the squished organs and all the discomfort that comes with the third trimester. I never thought I would make it to the third trimester. I never thought my baby would be big enough to make me this uncomfortable. All of it is a blessing. Liam was feeling concerned yesterday about how big Nora is getting. He said she’s taking up so much space in my body that he’s worried there won’t be any room left for my soul. Ha!

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We were able to come home for one last visit to Alabama before Nora arrives in mid July. Now that I’m past 32 weeks, Dr. Moise wants me to have weekly non-stress tests and biophysical profiles done. These are just tests to check Nora for any signs of distress. If anything unusual shows up they will probably deliver early to get her out of danger. This week I went to my regular OBGYN in Tuscaloosa, AL for the NST and BPP since I am here for the week. He was very hesitant at first and didn’t even want me to come to Alabama because I’m so high risk. Eventually he agreed to see me. It was very surreal to be back there where I had my two boys, back when everything was “normal.” When I went in to have Nora checked I liked pretending that I was just a regular pregnant lady going in for a normal check up. Dr. Chwe was so excited to see me pregnant and swollen with my rainbow baby. He is the one who did my follow up care after I gave birth to Lucy. Over the past two years we have had many appointments discussing my birth control/conception options after losing Lucy. He has seen me completely emotionally broken on several occasions (going anywhere near babies/pregnant people is extremely stressful after losing a baby.) Like all other doctors, he previously encouraged me NOT to have anymore children naturally because the baby just wouldn’t survive, and if I did I was told to use a sperm donor. He was thrilled to be wrong and was so kind and gracious. We both agreed that Dr. Moise is doing amazing, ground breaking work with the IVIG and that Nora is a miracle.

Nora looked great on the ultrasound. It was the same ultrasound room I was in when I had to go back several weeks after Lucy died to make sure my womb was empty. I had been bleeding a lot so the doctor wanted to check and make sure there was nothing left causing the bleeding. That was such a terrible feeling, looking at the screen at my empty womb and listening to the silence where her heartbeat should have been. This ultrasound was so different. Nora’s heartbeat was strong and my womb was FULL of chubby baby legs and wiggly arms and cute little cheeks. We could still see the pocket of blood in her abdomen- the reserve they put in during the last IUT. She is slowly absorbing the blood over these three weeks and will run out right before her next transfusion. Nora is still measuring very big- in the 97th percentile for her gestation. She is now 5 pounds and 12 ounces. I love that she is measuring three weeks ahead because she will probably be delivered three weeks early. Hopefully she’ll be the size of a normal little newborn baby. I can’t wait! Here are some of her 3D ultrasound pictures at 32 weeks:

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Transfusion #4 

Transfusion number four is done and now we only have one left before our Nora girl arrives! The procedure went very well and was the easiest one yet. Nora was in a great position for the procedure and tolerated the needles and extra blood well. She still isn’t making her own red blood cells (which is what we want) and 100% of her blood is donor blood (kell negative.) She is doing so well!

The past three IUTs have been difficult for me because one of the many medications they gave me was producing some bad side effects. Before starting each transfusion I am given several different medications- some to prevent nausea and vomiting, some to prevent acid reflux, another one to relax my uterus so I don’t contract during the procedure and a couple sedatives. I usually would feel fine when I went into the hospital but soon after the medications were given I would start to feel extremely uneasy, anxious, depressed and hopeless. It was strange but intense and the feeling wouldn’t leave until the next day. The main thing I always dreaded about the IUTs was this feeling of despair that came from one of the medications. Today we finally figured out that it was the Reglan they were giving me to prevent nausea. It has been known to have adverse psychological side effects (including depression and anxiety.) They didn’t give me any today and I felt GREAT. No anxiety or depression or hopeless feelings. I almost enjoyed it, seeing the tiny bassinet in the room and thinking about my baby girl coming so soon. Nora’s paralytic meds seemed to wear off quickly after the IUT was over and she kicked and rolled to let us know she was ok. I was able to be discharged from the hospital several hours earlier than usual.

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Thank you for praying for us today. I felt so much peace during the procedure and throughout the day. My mom said the other day, “It seems like the shadow of death has dissapeared and we can finally look forward to having Nora.” It does feel like that ominous shadow has been removed and we can let ourselves revel in hope. We cannot wait to meet our daughter. My next and last IUT will be in three weeks and I will be induced three weeks after that. I will probably be able to go home for one last visit to Alabama before the last IUT. I hope you all have a good weekend. I’ll end the post with a cute profile picture of Nora pursing her lips. It was taken right before the transfusion started this morning. Oh, how I love this baby girl 💕

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31 Weeks and an Early IUT

I am now 31 weeks pregnant and still in disbelief. At least once a day I have a surreal moment where I see myself in the mirror or I see “31 weeks 1 day” at the top of the ultrasound picture or I realize that it’s JUNE and I’m still pregnant and I catch my breath in amazement. How can this be? Wasn’t I told over and over again that I could NOT have another live baby unless she was lucky enough to get my blood type instead of Josh’s? I mourned my bitter losses- no more pregnancies, no more biological children. I thought I was barren, but now…

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IMG_6478I am 31 weeks pregnant and my baby girl is flourishing in my womb. The things God promised me are coming true. I have to pause right here and give Him the glory for this miracle. HE has done this and I praise Him for this miraculous gift.

Isaiah 41:17-20
When the poor and needy seek water, and there is none, and their tongue is parched with thirst, I the Lord will answer them; I the God of Israel will not forsake them. I will open rivers on the bare heights, and fountains in the midst of the valleys. I will make the wilderness a pool of water, and the dry land springs of water. I will put in the wilderness the cedar, the acacia, the myrtle, and the olive. I will set in the desert the cypress, the plane and the pine together, that they may see and know, may consider and understand together, that the hand of the Lord has done this, the Holy One of Israel has created it.

God has allowed our Nora to flourish and grow in the desert of my womb. Let’s “consider and understand together that the hand of the Lord has done this, the Holy One of Israel has created it.” Thank you, Lord.

Today I had my 31 week check up and pre-op appointment. The original plan was to do Nora’s fourth blood transfusion next week but Dr. Moise will be out of town, so we will be doing it tomorrow instead. At 31 weeks Nora is weighing in at four pounds five ounces. She’s measuring about three weeks ahead, as is my belly. She looked great on the ultrasound today.

Last week we had a scare when Nora failed her nightly kick count. She had been moving a lot less since her last transfusion and instead of the average 13 minutes it took her about an hour to get ten kicks in. The nurse told me to go get Nora checked in labor and delivery just to be safe. I did have a moment of sheer panic as I was getting ready to go in. What if there was no heart beat?! Isn’t this how many of the tragic stories about stillborn babies begin? I don’t have the luxury of thinking it could never happen to me. I know how often these precious babies go to heaven before birth, even in low risk pregnancies. Thankfully, Nora was fine and she had the most beautiful heart beat ever. They kept me on the monitors for a few hours just to be safe.

IMG_6475Look at her gorgeous heart rate at the top and on the bottom you can see my contractions. The doctors were concerned with the frequency and intensity of my contractions which I have been having for weeks now. I told them it was normal for me, but they would not let me leave without making sure that I wasn’t in preterm labor. They checked to see if I was dilated (I wasn’t at all) and they measured the length of my cervix (it was fine) and did another fetal fibronectin test. Everything showed that I was not in labor, even though the contractions continued every 2-5 minutes. They said I had an irritable uterus, probably from all the needles they have put in there during the blood transfusions. They finally sent me home and I felt extremely relieved to be going home with my baby still kicking inside me.

Since this next transfusion is being done a week early that means that Nora will be born a week earlier than anticipated. The longest she can go after a blood transfusion is three weeks, so if she goes three weeks after this one, then three more weeks after her fifth (and last) transfusion she will be born at 37 weeks. That’s right in the middle of July. The plan is to induce me, unless she is breech, and watch her closely to make sure she isn’t in distress. If she does start showing signs of distress they will deliver her by c-section but they seem fairly confident that I will be able to deliver vaginally. I am so happy about this! They also told me that Josh and I would probably get to spend some time with Nora right after birth before they take her away to the NICU. We will try to have some skin to skin bonding time and they even said I could probably breastfeed her once before they take her away. This would be a dream come true for me! I can’t wait to meet her. Thank you all for your prayers and encouragement. We are so close to the end, only six more weeks (or less) until we meet our miracle baby. Please pray that the IUT goes well tomorrow. It is scheduled for 8:30 in the morning. I’ll try to update the blog tomorrow night.